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Sample records for caregiver support program

  1. An employee assistance program for caregiver support.

    Science.gov (United States)

    Mains, Douglas A; Fairchild, Thomas J; René, Antonio A

    2006-01-01

    The Comprehensive Caregiver Choices Program provided support for employee caregivers of elderly people for employees at a hospital in Fort Worth, Texas. Key informant interviews and focus groups provided direction for program development and implementation. A full-time MSW and professionals with expertise in gerontology/geriatrics provided education and care coordination services to caregivers. Approximately 4% of the hospital's workforce participated in the program. Attendees evaluated educational sessions and follow-up interviews were conducted with program participants. Caregiver support programs must continue to seek innovative and creative marketing and service delivery methods to reach out and assist working caregivers in need of support.

  2. A Pilot Evaluation of the Family Caregiver Support Program

    Science.gov (United States)

    Chen, Ya-Mei; Hedrick, Susan C.; Young, Heather M.

    2010-01-01

    The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative…

  3. Emotions, Ideas and Experiences of Caregivers of Patients With Schizophrenia About "Family to Family Support Program".

    Science.gov (United States)

    Bademli, Kerime; Duman, Zekiye Çetinkaya

    2016-06-01

    "Family to Family Support Program" is a significant intervention program to assist families by informing them about treatment procedures and coping strategies, increasing their functionality, helping them to overcome the challenges of the disease. This study was particularly designed to investigate the emotions, thoughts, and experiences of caregivers of schizophrenia patients who participated in "Family to Family Support Program." The study was conducted with one of the qualitative research methods, phenomenological method. The study sample included caregivers who care for schizophrenia patients and participated in the "Family to Family Support Program". Twenty caregivers were included in the sample. The study was carried out in İzmir Schizophrenia Support Association. The study data were collected with four open ended questions. The average age of the participants was 56,77 ± 72,89, 10 male caregivers and 10 female caregivers, 9 caregivers were fathers, 6 caregivers were mothers, and 5 of them were siblings. The thematic analysis indicated that the emotions, thoughts and experiences of caregivers can be categorized in four groups: "I learned to deal with my problems", "I am conscious in my interaction with the patient and I know and I am not alone", "I feel much better", and "Schizophrenia is not the end of the road, knowledge sorts things out." Caregivers who participated in "Family to Family Support Program" expressed their satisfaction that they were benefited from the program, their coping skills were improved, they experienced less challenges when providing care, they understood the disease better, and it felt comfortable. Copyright © 2015 Elsevier Inc. All rights reserved.

  4. Online support and education for dementia caregivers: overview, utilization, and initial program evaluation.

    Science.gov (United States)

    Glueckauf, Robert L; Ketterson, Timothy U; Loomis, Jeffrey S; Dages, Pat

    2004-01-01

    Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are confronted with a variety of challenges in providing assistance to their loved ones, such as dealing with persistent, repetitive questions, managing episodes of agitation and aggressive responding, as well as monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, a significant proportion of dementia caregivers in the United States continue to receive little or no formal instruction in responding effectively to these anxiety-provoking situations. This paper describes the development and implementation of Alzheimer's Caregiver Support Online (also known as AlzOnline), an Internet- and telephone-based education and support network for caregivers of individuals with progressive dementia. An outcome analysis of a Robert Wood Johnson Foundation-funded strategic marketing initiative to promote the use of AlzOnline is reviewed, followed by a presentation of the findings of an initial program evaluation. Finally, future directions for online caregiver evaluation research are proposed.

  5. Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden, quality of life, and depression: A randomized controlled study.

    Science.gov (United States)

    Hu, Xiaolin; Dolansky, Mary A; Su, Yonglin; Hu, Xiuying; Qu, Moying; Zhou, Lingjuan

    2016-10-01

    Caregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China. To test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression. A randomized controlled design with repeated measures was used in this study. A total of 118 participants were randomized into experimental (n=59) and control groups (n=59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables. There were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers' physical health at either 3 or 6 months following discharge. A multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs. Copyright © 2016 Elsevier Ltd. All rights reserved.

  6. The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients.

    Science.gov (United States)

    Hudson, Peter; Aranda, Sanchia

    2014-09-01

    A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers' preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  7. The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients

    Science.gov (United States)

    Hudson, Peter; Aranda, Sanchia

    2014-01-01

    Background A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research. Purpose To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers. Methods Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test. Results Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme. Conclusions The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated. PMID:24644195

  8. Alzheimer's Caregiver Support Online: lessons learned, initial findings and future directions.

    Science.gov (United States)

    Glueckauf, Robert L; Loomis, Jeffrey S

    2003-01-01

    Family caregivers of older adults with progressive dementia (e.g., Alzheimer's disease) are faced with a variety of emotional and behavioral difficulties, such as dealing with persistent, repetitive questions, managing agitation and depression, and monitoring hygiene and self-care activities. Although professional and governmental organizations have called for the creation of community-based education and support programs, most dementia caregivers continue to receive little or no formal instruction in responding effectively to these challenges. The current paper describes the development and implementation of Alzheimer's Caregiver Support Online, a Web- and telephone-based education and support network for caregivers of individuals with progressive dementia. Lessons learned from the first two years of this state-supported initiative are discussed, followed by the findings of a Robert Wood Johnson Foundation-funded strategic marketing initiative and an initial program evaluation of AlzOnline's Positive Caregiving classes. Finally, clinical implications and future directions for program development and evaluation research are proposed.

  9. Dementia caregivers' responses to 2 Internet-based intervention programs.

    Science.gov (United States)

    Marziali, Elsa; Garcia, Linda J

    2011-02-01

    The aim of this study was to examine the impact on dementia caregivers' experienced stress and health status of 2 Internet-based intervention programs. Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group. Pre-post outcome measures focused on distress, health status, social support, and service utilization. In contrast to the Chat Group, the Video Group showed significantly greater improvement in mental health status. Also, for the Video Group, improvements in self-efficacy, neuroticism, and social support were associated with lower stress response to coping with the care recipient's cognitive impairment and decline in function. The results show that, of 2 Internet-based intervention programs for dementia caregivers, the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response.

  10. The effect of the support program on the resilience of female family caregivers of stroke patients: Randomized controlled trial.

    Science.gov (United States)

    İnci, Fadime Hatice; Temel, Ayla Bayik

    2016-11-01

    The purpose of the study was to determine the effect of a support program on the resilience of female family caregivers of stroke patients. This is a randomized controlled trial. The sample consisted 70 female family caregivers (34 experimental, 36 control group). Data were collected three times (pretest-posttest, follow-up test). Data were collected using the demographical data form, the Family Index of Regenerativity and Adaptation-General. A significant difference was determined between the experimental and control group's follow-up test scores for relative and friend support, social support and family-coping coherence. A significant difference was determined between the experimental group's mean pretest, posttest and follow-up test scores in terms of family strain, relative and friend support, social support, family coping-coherence, family hardiness and family distress. These results suggest that the Support Program contributes to the improvement of the components of resilience of family caregivers of stroke patients. Copyright © 2016 Elsevier Inc. All rights reserved.

  11. Effects of rehabilitation services on anxiety, depression, care-giving burden and perceived social support of stroke caregivers.

    Science.gov (United States)

    Karahan, Ali Yavuz; Kucuksen, Sami; Yilmaz, Halim; Salli, Ali; Gungor, Tayfun; Sahin, Muhammed

    2014-01-01

    Few data are available on the specific care giving-related problems of stroke patient's caregivers and factors that influence the burden of these caregivers. To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. A prospective clinical trial. Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM). The Beck Anxiety Scale (BAS) and the Beck Depression Scale (BDS) were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS) for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS) for perceived social support assessment. A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients' functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with stress effectively.

  12. EFFECTS OF REHABILITATION SERVICES ON ANXIETY, DEPRESSION, CARE-GIVING BURDEN AND PERCEIVED SOCIAL SUPPORT OF STROKE CAREGIVERS

    Directory of Open Access Journals (Sweden)

    Ali Yavuz Karahan

    2014-01-01

    Full Text Available Background: Few data are available on the specific care giving-related problems of stroke patient’s caregivers and factors that influence the burden of these caregivers. Aim: To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. Design: A prospective clinical trial. Setting: Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Populations: Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Methods: Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM. The Beck Anxiety Scale (BAS and the Beck Depression Scale (BDS were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS for perceived social support assessment. Results: A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p < 0.05. Conclusion: Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients’ functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. Clinical Rehabilitation Impact: The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with

  13. The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population.

    Science.gov (United States)

    Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit

    2018-03-01

    We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p Family caregiver burden were also higher in depressive groups (p family caregiver role was negatively correlated (p caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.

  14. Implementation of a Psychoeducational Program for Cancer Survivors and Family Caregivers at a Cancer Support Community Affiliate: A Pilot Effectiveness Study.

    Science.gov (United States)

    Dockham, Bonnie; Schafenacker, Ann; Yoon, Hyojin; Ronis, David L; Kershaw, Trace; Titler, Marita; Northouse, Laurel

    2016-01-01

    Psychoeducational interventions, tested for efficacy in randomized clinical trials, are seldom implemented in clinical practice where cancer survivors and their family caregivers can benefit from them. This study examined the effectiveness of the FOCUS Program on cancer survivors' and their family caregivers' outcomes when implemented at a Cancer Support Community (CSC) affiliate by agency social workers. Study aims were to (1) test effects of the program on survivor and caregiver outcomes as a unit and (2) determine program feasibility in terms of enrollment, retention, intervention fidelity, and satisfaction. A preintervention and postintervention pilot effectiveness study was conducted with 34 cancer survivor-caregiver dyads (ie, pairs). The FOCUS Program, originally delivered by nurses in dyads' homes, was modified to a small-group format and delivered by CSC social workers. The primary outcome was quality of life (QOL). Intermediary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included repeated-measures analysis of variance. Dyads had significant improvements in total QOL; physical, emotional, and functional QOL; benefits of illness; and self-efficacy. Effect sizes were similar to prior randomized clinical trial findings. Although dyads were difficult to recruit (enrollment, 60%), both retention (92%) and intervention fidelity (94%) were high. It was possible to implement the FOCUS Program at a CSC affiliate by agency staff, obtain positive intervention effects, and maintain intervention fidelity. Researchers and clinicians need to collaborate to implement more evidence-based interventions in practice settings for cancer survivors and their family caregivers.

  15. Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

    Science.gov (United States)

    Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

    2016-06-01

    Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

  16. Accessible Support for Family Caregivers of Seniors with Chronic Conditions: From Isolation to Inclusion

    Science.gov (United States)

    Stewart, Miriam; Barnfather, Alison; Neufeld, Anne; Warren, Sharon; Letourneau, Nicole; Liu, Lili

    2006-01-01

    Accessible support programs can improve health outcomes for family caregivers of older relatives with a chronic condition. Over the course of 6 months, 27 experienced family caregivers provided weekly support via the telephone to 66 individuals, either new family caregivers of seniors recently diagnosed with stroke or newly vulnerable family…

  17. Informal and Formal Social Support and Caregiver Burden: The AGES Caregiver Survey

    Science.gov (United States)

    Shiba, Koichiro; Kondo, Naoki; Kondo, Katsunori

    2016-01-01

    Background We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P support was not (β = −0.30, P = 0.39). Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001). Compared to caregivers without informal support, those who had one support (β = −1.62, P supports (β = −1.55, P support. Conclusions Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden. PMID:27180934

  18. Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender.

    Science.gov (United States)

    Hsiao, Chiu-Yueh

    2010-12-01

    The purpose of this study was to assess gender effects on family demands, social support and caregiver burden as well as to examine contributing factors of caregiver burden in caring for family members with mental illness. Providing continued care and support for people with mental illness is demanding and challenging. Findings of earlier caregiving studies on the role of caregiver gender in response to caregiver burden and caregiving-related factors have been inconsistent. Little research has been undertaken to examine gender effect on family demands, social support and caregiver burden in Taiwanese family caregivers of individuals with mental illness. Cross-sectional, descriptive correlation design. Data from 43 families, including at least one male and female family caregiver in each family, were analysed using descriptive statistics, principal component analysis and mixed linear modelling. Demographic data, Perceived Stress Scale, Perceived Social Support and Caregiver Burden Scale-Brief were used to collect data. Female family caregivers perceived less social support and experienced higher degrees of caregiver burden compared with male family caregivers. In contrast, no significant gender effect was associated with family demands. Family caregivers with greater family demands and less social support experienced higher degrees of caregiver burden. The results reinforced those of previously published studies that caregiver burden is highly prevalent among female family caregivers. Caregiver gender appears to be highly valuable for explaining family demands, social support and caregiver burden. Health care professionals should continue to collaborate with family caregivers to assess potential gender effects on available support and design gender-specific interventions to alleviate caregiver burden. © 2010 Blackwell Publishing Ltd.

  19. Social support for diabetes illness management: supporting adolescents and caregivers.

    Science.gov (United States)

    Idalski Carcone, April; Ellis, Deborah A; Weisz, Arlene; Naar-King, Sylvie

    2011-10-01

    The aim of this research study was to examine the relationship between 4 sources of social support (support for the adolescent from family, support for the adolescent from friends, support for the caregiver from another adult, and support to the family from the health care provider) and adolescents' diabetes outcomes (illness management behavior and health status) using a diverse sample of urban adolescents. One hundred forty-one adolescents with insulin-managed diabetes and their primary caregivers completed questionnaires assessing social support and illness management behavior. Glucose meters were downloaded and hemoglobin A1c assays were obtained. Structural equation modeling was used to test a model social support informed by social ecological theory. The results of the structural equation modeling indicated that support for the caregiver from another adult was directly and positively related to support for the adolescent from family and indirectly related to better illness management. Support for the adolescent from family was directly related to better diabetes management and, through better management, to better diabetes health. Support to the family from the health care provider was not related to support for the adolescent and support to the adolescent from friends was not related to illness management, as hypothesized. This study identifies a novel target for social support intervention to improve adolescents' illness management behavior-the caregivers of adolescents with diabetes. By enhancing the social support caregivers receive from other adults in their lives, caregivers' ability to support their adolescent children with diabetes might also be improved which, in turn, improves adolescents' illness outcomes.

  20. Worksite-based internet multimedia program for family caregivers of persons with dementia.

    Science.gov (United States)

    Beauchamp, Natasha; Irvine, A Blair; Seeley, John; Johnson, Brian

    2005-12-01

    Our goal was to evaluate the efficacy of a multimedia support program delivered over the Internet to employed family caregivers of persons with dementia. The evaluation of this program involved 299 employed family caregivers participating in a pretest-posttest randomized clinical trial with a 30-day follow-up and a waitlist control condition. Validated instruments include the Center for Epidemiologic Studies-Depression scale, the State-Trait Anxiety Inventory, the Caregiver Strain scale from Benjamin Rose, and Positive Aspects of Caregiving used in the nationwide REACH study. Those who viewed Caregiver's Friend: Dealing with Dementia 30 days postexposure demonstrated significant improvements in depression, anxiety, level and frequency of stress, caregiver strain, self-efficacy, and intention to seek help, as well as perceptions of positive aspects of caregiving. Interactive multimedia interventions delivered over the Internet appear to be uniquely suited to provide low-cost, effective, convenient, individually tailored programs that present educational information, cognitive and behavioral skills, and affective learning opportunities. This makes Web-based multimedia a promising avenue for work-life balance programs, employee-assistance providers, and organizations interested in improving family caregiver health and well-being.

  1. Taking Care of You: Support for Caregivers

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    ... For Parents / Taking Care of You: Support for Caregivers What's in this article? The Caregiver's Dilemma Tips for Caregivers More Tips Getting Help ... there are moments when the sheer magnitude of what you're up against is so ... not alone. The Caregiver's Dilemma When you're the caregiver of a ...

  2. The effect of a supportive educational program based on COPE model on caring burden and quality of life in family caregivers of women with breast cancer.

    Science.gov (United States)

    Bahrami, Masoud; Farzi, Saba

    2014-03-01

    The family caregivers of the people with cancer such as breast cancer experience a decrease in their quality of life and an increase of their caring burden. In most of the cases, the researchers consider the quality of life and physical and psychological problems in patients with cancer and pay less attention to the family caregivers. To reduce the caring burden imposed to the caregivers and improve their quality of life, supportive strategies such as problem solving can be used. These interventions may have benefits for the caregivers although the research results are contradictory. The aim of this research was to determine the effect of a supportive educational program, based on COPE model, which focuses on creativity, optimism, planning, and expert information on individuals, on the caring burden and quality of life in the family caregivers of women with breast cancer. The present study is a clinical trial, which was conducted in Seyed-Al-Shohada Hospital of Isfahan University of Medical Sciences and a private center of chemotherapy in 2012. In this study, researchers investigated the effect of a supportive educational program based on COPE model on the caring burden and quality of life in the family caregivers of women with breast cancer. This supportive educational program included two hospital visits and two telephone sessions based on COPE model for 9 days. A total of 64 patients were selected based on the inclusion criteria and randomly assigned into two groups. Data were collected by use of Caregiver Quality of Life Index-Cancer (CQOL-C), World Health Organization Quality of Life - Bref(WHOQOL-Bref)_, and Zarit caring burden at the beginning of the intervention and a month after the intervention. The results showed that in the experimental group, the mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group, but there was no change in the

  3. Nursing Support of Home Hospice Caregivers on the Day of Patient Death.

    Science.gov (United States)

    Clayton, Margaret F; Hulett, Jennifer; Kaur, Kirandeep; Reblin, Maija; Wilson, Andrew; Ellington, Lee

    2017-07-01

    To describe nurse-caregiver communication on the day of patient death.
. A descriptive secondary analysis of 44 audio-recorded home hospice nursing visits on day of death.
. Nine hospices in Utah, Oregon, and Massachusetts.
. 42 caregiver-patient dyads, 27 hospice nurses.
. Transcripts of audio recordings were coded for supportive nursing communication and relative time spent in physical, psychosocial, and spiritual discussion.
. Tangible, emotional, informational, esteem, and networking supportive communication; nurses' self-reported communication effectiveness; caregiver religious affiliation.
. Nurses reported that their communication skills were less effective when discussing difficult topics as compared to their overall communication effectiveness. Eleven patients died before the nursing visit, 3 died during the visit, and 30 died post-visit. Nurses primarily engaged in discussions facilitating caregiver emotional, tangible, and informational support. More informational support was observed when patient death occurred during the nursing visit. Time spent in general conversation showed that physical care conversations predominated (80% of the average overall amount of conversation time), compared to lifestyle/psychosocial discussions (14%) and spiritual discussions (6%). Spiritual discussions were observed in only 7 of 44 hospice visits. Spiritual discussions, although short and infrequent, were significantly longer, on average, for caregivers without a religious affiliation.
. Nurses support caregivers on the day of patient death using multiple supportive communication strategies. Spiritual discussions are minimal.
. Communication skills programs can potentially increase self-reported communication effectiveness. Emerging acute spiritual concerns, particularly for caregivers without a previous religious affiliation, should be anticipated. Spiritual support is included in the hospice model of holistic care.

  4. Caregiver Café: Providing Education and Support to Family Caregivers of Patients With Cancer
.

    Science.gov (United States)

    Finley, Joanne P

    2018-02-01

    The many burdens faced by caregivers of patients with cancer are well documented. Caregivers are asked to perform procedures, make assessments, coordinate care, and communicate with healthcare providers at an increasingly complex level. A caregiver quality improvement project, in the form of a Caregiver Café, was instituted at a National Cancer Institute-designated comprehensive cancer center.
. The objectives of the café are to (a) provide respite and a place for caregivers to relax and be nurtured, (b) provide a place for caregivers to meet and support each other, (c) provide answers to caregiver questions, and (d) recommend appropriate caregiver resources.
. The weekly Caregiver Café is led by an advanced practice nurse, and the format varies depending on the needs of the caregivers who attend.
. Caregivers have verbalized the importance of the café in helping them cope with their loved ones' cancers and treatments, and many attend on a regular basis. The Caregiver Café provides support and information and a place to get away from it all.

  5. Beyond stroke : Description and evaluation of an effective intervention to support family caregivers of stroke patients

    NARCIS (Netherlands)

    Schure, Lidwien M.; van den Heuvel, Elisabeth T. P.; Stewart, Roy E.; Sanderman, Robbert; de Witte, Luc P.; Meyboom-de Jong, Betty

    Objective: The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den

  6. Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

    Science.gov (United States)

    Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

    2018-03-01

    Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

  7. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review

    Directory of Open Access Journals (Sweden)

    Maja Lopez Hartmann

    2012-08-01

    Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

  8. Effectiveness and cost-effectiveness of an in-home respite care program in supporting informal caregivers of people with dementia: design of a comparative study.

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    Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Annemans, Lieven

    2016-12-02

    Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated. This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. 124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial. This study will have great added value

  9. Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review.

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    Egan, Kieren J; Pinto-Bruno, Ángel C; Bighelli, Irene; Berg-Weger, Marla; van Straten, Annemieke; Albanese, Emiliano; Pot, Anne-Margriet

    2018-03-01

    Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and support programs hold considerable promise for scaling up, we reviewed existing literature. We systematically searched 6 databases to identify studies of Internet-based interventions designed to train and support caregivers of people with dementia, and we formally assessed risk of bias. Our prespecified primary outcomes of interest included both mental health and caregiver burden/perceived stress. Our secondary outcomes of interest included knowledge, quality of life of caregivers, quality of care, caregiver response to challenging behaviors, coping, and self-efficacy. Eight randomized control trials met our inclusion criteria involving over 900 participants. The content and structure of Internet-based interventions, outcome measures, and duration differed markedly, and selection, performance, and reporting biases were varied and on occasion of concern. Six studies reported outcomes in caregivers' mental health outcomes, 3 studies reported burden outcomes. Three studies reported knowledge skills, quality of life and reaction to challenging behaviours, whereas 2 studies reported changes in coping outcomes and self-efficacy. No studies reported outcomes on quality of care. Although there is some evidence that Internet-based interventions can improve mental health outcomes for informal caregivers of people with dementia, marked methodological diversity across studies prevented the robust pooling of the results. A concerted and cohesive approach from all stakeholders is now required to help realize the full potential of this emerging field. Copyright © 2017. Published by Elsevier Inc.

  10. Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

    Directory of Open Access Journals (Sweden)

    Giesbrecht Melissa

    2012-11-01

    Full Text Available Abstract Introduction Family (i.e., unpaid caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB. Methods This analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced

  11. Comprehensive Support for Family Caregivers of Post-9/11 Veterans Increases Veteran Utilization of Long-term Services and Supports: A Propensity Score Analysis

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    Shepherd-Banigan, Megan; Smith, Valerie A.; Stechuchak, Karen M.; Miller, Katherine E. M.; Hastings, Susan Nicole; Wieland, Gilbert Darryl; Olsen, Maren K.; Kabat, Margaret; Henius, Jennifer; Campbell-Kotler, Margaret; Van Houtven, Courtney Harold

    2018-01-01

    Family caregivers are an important component of the long-term services and supports (LTSS) system. However, caregiving may have negative consequences for caregiver physical and emotional health. Connecting caregivers to formal short-term home- and community-based services (HCBS), through information resources and referrals, might alleviate family caregiver burden and delay nursing home entry for the patient. The aim of this study was to evaluate the early impact of the Program of Comprehensive Assistance for Family Caregivers (PCAFC) (established by P.L. 111-163 for family caregivers of seriously injured post-9/11 Veterans) on Veteran use of LTSS. A two-cohort pre-post design with a nonequivalent comparison group (treated n = 15 650; comparison n = 8339) was used to (1) examine the association between caregiver enrollment in PCAFC and any VA-purchased or VA-provided LTSS use among Veterans and (2) describe program-related trends in HCBS and institutional LTSS use. The comparison group was an inverse-propensity-score weighted sample of Veterans whose caregivers applied for, but were not accepted into, the program. From baseline through 24 months post application, use of any LTSS ranged from 13.1% to 17.8% for Veterans whose caregivers were enrolled in PCAFC versus from 3.8% to 5.3% for Veterans in the comparison group. Participation in PCAFC was associated with a statistically significant increased use of any LTSS from 1 to 24 months post application (over time odds ratios ranged from 2.71 [95% confidence interval: 2.31-3.17] to 4.86 [3.93-6.02]). Support for family caregivers may enhance utilization of LTSS for Veterans with physical, emotional, and/or cognitive conditions. PMID:29591540

  12. Perceived Social Support and Caregiver Strain in Caregivers of Children with Tourette's Disorder

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    Schoeder, Chrystal Edge; Remer, Rory

    2007-01-01

    The research on Tourette's disorder (TD), a neuropsychological disorder consisting of motor and phonic tics, has largely focused on individuals with TD and not on the caregivers of children with TD. We investigated the effects of several variables on caregiver strain of caregivers of children with TD, including perceived social support, caregiver…

  13. Understanding How to Support Family Caregivers of Seniors with Complex Needs

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    Charles, Lesley; Brémault-Phillips, Suzette; Parmar, Jasneet; Johnson, Melissa; Sacrey, Lori-Ann

    2017-01-01

    Purpose of the Study The purpose of this study was to describe the experiences and challenges of supporting family caregivers of seniors with complex needs and to outline support strategies and research priorities aimed at supporting them. Design and Methods A CIHR-funded, two-day conference entitled “Supporting Family Caregivers of Seniors: Improving Care and Caregiver Outcomes” was held. An integrated knowledge translation approach guided this planning conference. Day 1 included presentations of research evidence, followed by participant engagement Qualitative data was collected regarding facilitators, barriers/gaps, and recommendations for the provision of caregiver supports. Day 2 focused on determination of research priorities. Results Identified facilitators to the provision of caregiver support included accessibility of health-care and community-based resources, availability of well-intended health-care providers, and recognition of caregivers by the system. Barriers/gaps related to challenges with communication, access to information, knowledge of what is needed, system navigation, access to financial resources, and current policies. Recommendations regarding caregiver services and research revolved around assisting caregivers to self-identify and seek support, formalizing caregiver supports, centralizing resources, making system navigation available, and preparing the next generation for caregiving. Implication A better understanding of the needs of family caregivers and ways to support them is critical to seniors’ health services redesign. PMID:28690707

  14. "I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs.

    Science.gov (United States)

    Milliken, Aimee; Mahoney, Ellen K; Mahoney, Kevin J; Mignosa, Kate; Rodriguez, Isabella; Cuchetti, Catherine; Inoue, Megumi

    2018-05-17

    Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD. Semi-structured interviews were audio-recorded with a purposive sample of caregivers. Transcribed interviews were analyzed using conventional content analysis. Fifty-four caregivers of individuals with a range of disabilities participated (age 34-78, M 59.9 ± 8.8; male 19%; spouse 17%, parent 61%). Six categories emerged from the analysis: contextualizing complexity, complexity in transitions, coping with complexity: advocacy & isolation, supportive support, unsupportive support, and systems challenges. Caregivers emphasized the interplay between unpredictability, transitions, and complexity and the interaction between the person receiving support, the caregiver's own situation, and the environment. Findings highlight the need, and provide a guide, for family assessment and for tailoring interventions matched to the profiles and self-identified challenges of families living with disability. Social workers can learn what families see as complex and what support broker behaviors families find helpful, and which not.

  15. Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

    Science.gov (United States)

    LaValley, Susan A; Gage-Bouchard, Elizabeth A

    2018-04-01

    Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

  16. Social support moderates caregiver life satisfaction following traumatic brain injury.

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    Ergh, Tanya C; Hanks, Robin A; Rapport, Lisa J; Coleman, Renee D

    2003-12-01

    Social support is an important determinant of adjustment following traumatic brain injury (TBI) sustained by a family member. The present study examined the extent to which social support moderates the influence of characteristics of the person with injury on caregiver subjective well-being. Sixty pairs of individuals who had sustained a moderate to severe TBI and their caregivers (N=120) participated. Years postinjury ranged from 0.3 to 9.9 ( M=4.8, SD=2.6). Cognitive, functional, and neurobehavioral functioning of participants with TBI were assessed using neuropsychological tests and rating scales. Caregiver life satisfaction and perceived social support were assessed using self-report questionnaires. Results indicated that time since injury was unrelated to life satisfaction. Neurobehavioral disturbances showed an inverse relation with life satisfaction. Social support emerged as an important moderator of life satisfaction. Only among caregivers with low social support was cognitive dysfunction adversely related to life satisfaction. Similarly, a trend suggested that patient unawareness of deficit was associated with caregiver life dissatisfaction only among caregivers with low social support. In contrast, these characteristics were unrelated to life satisfaction among caregivers with adequate social support.

  17. Caregiver burden in Alzheimer's disease: Moderation effects of social support and mediation effects of positive aspects of caregiving.

    Science.gov (United States)

    Wang, Zhixin; Ma, Caiyun; Han, Hongjuan; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

    2018-06-01

    Although there are many studies on the relationship between patient-related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. We aimed to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community-dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. We conducted a cross-sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias-corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Social support significantly moderated the effects of AD patient cognitive function (P mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient-related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life. Copyright © 2018 John Wiley & Sons, Ltd.

  18. The Effects of a Family Support Program Including Respite Care on Parenting Stress and Family Quality of Life Perceived by Primary Caregivers of Children with Disabilities in Korea

    Science.gov (United States)

    Sung, Minjung; Park, Jiyeon

    2012-01-01

    In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were…

  19. Caregiving-specific worry, affiliate stigma, and perceived social support on psychological distress of caregivers of children with physical disability in Hong Kong.

    Science.gov (United States)

    Ma, Gloria Y K; Mak, Winnie W S

    2016-01-01

    The present study tested a model on the relationship between functional status of children with physical disability, caregiving-specific worry, affiliate stigma, and psychological distress among their caregivers. One hundred thirty-one caregivers of children with physical disability in Hong Kong completed a self-report questionnaire. Structural equation modeling showed that the final model had good fit to the data: χ2 = 102.05, (df = 83, p = .08), comparative fit index = .98, nonnormed fit index = .98, standardized root mean square residual = .08, root mean square error of approximation = .04. Caregivers whose children had a lower functional status reported more caregiving-specific worry. Affiliate stigma had significant and positive indirect effect on psychological distress through increasing worry. Results also supported the direct and indirect effects of perceived social support in ameliorating worry, affiliate stigma, and psychological distress. Findings suggested that health care and social service providers should consider the functional impairment of each child when designing stress reduction interventions for their caregivers. Findings implicate the importance of establishing barrier-free environment and public facilities in the society. Caregivers are encouraged to distinguish those worries that are actionable and convert them into problem solving plans and to actively engage in peer support and social activities to reduce their affiliate stigma. To truly promote inclusion and well-being of individuals with disability and their caregivers, the scope and targets of social services and stigma reduction programs by the government should include not only the persons with disabilities, but also their caregivers and family members who play essential roles in the rehabilitation journey. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

  20. Perceived support from a caregiver's social ties predicts subsequent care-recipient health

    Directory of Open Access Journals (Sweden)

    Dannielle E. Kelley

    2017-12-01

    Full Text Available Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health.We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012 and the first round of the associated National Study of Caregivers survey (2011. Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016.Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2.Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network. Keywords: Informal caregiving, Social support, Social support network, Patient-caregiver dyads

  1. Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

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    Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

    2017-09-01

    To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.

  2. Stakeholder Perspectives on Policies to Support Family Caregivers of Older Adults with Dementia

    Science.gov (United States)

    Putnam, Michelle; Pickard, Joseph G.; Rodriguez, Carroll; Shear, Erin

    2010-01-01

    Persons with dementia are often excluded from consumer-directed home- and community-based service programs because they cannot direct their own care. Surrogates are permitted in some states, thereby allowing program participation. This study explored family caregiver perspectives on policies that support family needs related to providing care to…

  3. Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance.

    Science.gov (United States)

    Park, Sang Min; Kim, Young Jin; Kim, Samyong; Choi, Jong Soo; Lim, Ho-Yeong; Choi, Youn Seon; Hong, Young Seon; Kim, Si-Young; Heo, Dae Seog; Kang, Ki Moon; Jeong, Hyun Sik; Lee, Chang Geol; Moon, Do Ho; Choi, Jin-Young; Kong, In Sik; Yun, Young Ho

    2010-06-01

    Family caregivers play an important role in caring for cancer patients, but the impact of caregivers' unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood. We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL). Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P < 0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR) = 7.55; 95% confidential interval (CI) 3.80-15.00), psychosocial support (aOR = 6.24; 95% CI 2.95-13.05), symptom management (aOR = 3.21; 95% CI 2.26-4.54), community support (aOR = 3.82; 95% CI 2.38-6.11), or religious support (aOR = 4.55; 95% CI 1.84-11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR = 1.21; 95% CI 1.00-1.47), psychosocial support (aOR = 1.99; 95% CI 1.37-2.88), and religious support (aOR = 1.73; 95% CI 1.08-2.78) than those of patients receiving palliative hospice care. Caregivers' unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.

  4. Caregiving: The impact on emotional support for single women.

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    Burnley, C S

    1987-01-01

    Even though filial caregivers are typically daughters rather than sons, examinations of caregiving have not adequately considered the impact of gender and marital status differences on the support systems that mediate the strain of caring. Because of competing demands on time and energy, caregivers make many changes in their personal activities while maintaining work and immediate family responsibilities. The friendships that provide emotional support for singles are perceived as less important than familial relationships. Therefore, the assumption is made that the single adult daughter has less to give up as compared to her married siblings. The parallel emotional support systems of the married and single caregivers go unrecognized. This study of never-married women over age 30 reveals that these caregivers essentially foreclosed social relationships in order to provide care. Copyright © 1987. Published by Elsevier Inc.

  5. Caregivers' support needs and factors promoting resiliency after brain injury.

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    Kitter, Bryony; Sharman, Rachael

    2015-01-01

    This article explores the challenges, support needs and coping strategies of caregivers of people with an acquired brain injury (ABI). Semi-structured interviews were conducted with caregivers (n = 20) to explore their support services received, access barriers, utility of services, needed supports, coping strategies and factors promoting life satisfaction. The team recorded, transcribed verbatim and inductively analysed all interviews. Through thematic data analysis, three central themes were revealed: (a) barriers impeding quality-of-life, (b) support needed to improve quality-of-life and (c) factors enabling quality-of-life. All perspectives from the participants involved are synthesized to provide a rich depiction of caregivers' support needs and coping strategies. Two specific findings of interest include a negative association between severity of brain injury and caregiver's desire to direct treatment, as well as a distinct service gap in assistance for caregivers who are caring for someone with violent/offending behaviours. This study recommends short- and long-term changes, given Australia's upcoming National Disability Insurance Scheme, to increase caregiver quality-of-life, which will ultimately affect the rehabilitation outcomes of persons with ABI.

  6. Support for Families: Working with Parents and Caregivers to Support Children from Birth to Three Years of Age.

    Science.gov (United States)

    Hanssen, Elizabeth, Ed.; Zimanyi, Louise, Ed.

    2000-01-01

    This theme issue of Coordinators' Notebook focuses on how early childhood care and development (ECCD) programs world-wide can work with parents and caregivers to support children from birth to 3 years of age. Section 1 of the journal describes the needs of parents and families and the development of parent programs around the world. Section 2…

  7. Perceived support from a caregiver's social ties predicts subsequent care-recipient health.

    Science.gov (United States)

    Kelley, Dannielle E; Lewis, Megan A; Southwell, Brian G

    2017-12-01

    Most social support research has examined support from an individual patient perspective and does not model the broader social context of support felt by caregivers. Understanding how social support networks may complement healthcare services is critical, considering the aging population, as social support networks may be a valuable resource to offset some of the demands placed on the healthcare system. We sought to identify how caregivers' perceived organizational and interpersonal support from their social support network influences care-recipient health. We created a dyadic dataset of care-recipient and caregivers from the first two rounds of the National Health and Aging Trends survey (2011, 2012) and the first round of the associated National Study of Caregivers survey (2011). Using structural equation modeling, we explored how caregivers' perceived social support is associated with caregiver confidence to provide care, and is associated with care-recipient health outcomes at two time points. All data were analyzed in 2016. Social engagement with members from caregivers' social support networks was positively associated with caregiver confidence, and social engagement and confidence were positively associated with care-recipient health at time 1. Social engagement positively predicted patient health at time 2 controlling for time 1. Conversely, use of organizational support negatively predicted care-recipient health at time 2. Care-recipients experience better health outcomes when caregivers are able to be more engaged with members of their social support network.

  8. Impact of a community based implementation of REACH II program for caregivers of Alzheimer's patients.

    Directory of Open Access Journals (Sweden)

    Kristine Lykens

    Full Text Available BACKGROUND: In 2009 an estimated 5.3 million people in the United States were afflicted with Alzheimer's disease, a degenerative form of dementia. The impact of this disease is not limited to the patient but also has significant impact on the lives and health of their family caregivers. The Resources for Enhancing Alzheimer's Caregiver Health (REACH II program was developed and tested in clinical studies. The REACH II program is now being delivered by community agencies in several locations. This study examines the impact of the REACH II program on caregiver lives and health in a city in north Texas. STUDY DESIGN: Family caregivers of Alzheimer's patients were assessed using an instrument covering the multi-item domains of Caregiver Burden, Depression, Self-Care, and Social Support upon enrollment in the program and at the completion of the 6 month intervention. The domain scores were analyzed using a multivariate paired t-test and Bonferroni confidence interval for the differences in pre- and post-service domain scores. RESULTS: A total of 494 families were enrolled in the program during the period January 1, 2011 through June 30, 2012. Of these families 177 completed the 6 month program and have pre - and post service domain scores. The median age for the caregivers was 62 years. The domain scores for Depression and Caregiver Burden demonstrated statistically significant improvements upon program completion. CONCLUSION: The REACH II intervention was successfully implemented by a community agency with comparable impacts to those of the clinical trial warranting wider scale implementation.

  9. Exploring the influence of Internet-based caregiver support on experiences of isolation for older spouse caregivers in rural areas: a qualitative interview study.

    Science.gov (United States)

    Blusi, Madeleine; Kristiansen, Lisbeth; Jong, Mats

    2015-09-01

    Many older spouse caregivers are tied to the home by their caring duties and feel isolated. The values of supporting older caregivers are well known. In rural areas with long distances and decline in essential services, attending caregiver support groups can be difficult. Using Internet-based services can provide an opportunity for rural caregivers to participate in caregiver support, regardless of geographical distances and without the need for physical presence. This study aimed to explore how Internet-based caregiver support may influence the experience of isolation among older spouse caregivers in rural areas. An intervention study where 63 older rural caregivers received an Internet-based caregiver support service. A qualitative interview study based on 31 interviews with open-ended questions, analysed using latent content analysis. Two themes represent the findings from the study: Expanding the concept of place and Developing networks. Even though participants still spent their days in the house, they experienced that daily life was being spent in a variety of places, both physically, virtually and emotionally. The Internet-based support service provided them with a tool to reconnect with family and develop new friends. Internet-based caregiver support may reduce the experience of isolation for spouse caregivers in rural areas. Nurses played a crucial part in the development, by encouraging, educating and inspiring caregivers and supporting their independence. Internet-based services ought to be an option for caregiver support in rural areas as it may reduce feelings of isolation for older spouse caregivers. © 2014 John Wiley & Sons Ltd.

  10. Memory and communication support in dementia: research-based strategies for caregivers.

    Science.gov (United States)

    Smith, Erin R; Broughton, Megan; Baker, Rosemary; Pachana, Nancy A; Angwin, Anthony J; Humphreys, Michael S; Mitchell, Leander; Byrne, Gerard J; Copland, David A; Gallois, Cindy; Hegney, Desley; Chenery, Helen J

    2011-03-01

    Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers. From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education. The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies. Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.

  11. Cancer Support Needs for African American Breast Cancer Survivors and Caregivers.

    Science.gov (United States)

    Haynes-Maslow, Lindsey; Allicock, Marlyn; Johnson, La-Shell

    2016-03-01

    Improved cancer screening and treatment advances have led to higher cancer survival rates in the United States. However, racial disparities in breast cancer survival persist for African American women who experience lower survival rates than white women. These disparities suggest that unmet needs related to survivorship still exist. This study focuses on the challenges that both African American cancer survivors and caregivers face across the cancer continuum. Five African American focus groups examined cancer survivor and caregiver support needs. Focus groups were recorded, transcribed, and uploaded into Atlas.ti. Thematic content analysis was applied to the text during the coding process. Themes were identified and emphasized based on the research team's integrated and unified final codes. Forty-one African Americans participated in five focus groups: 22 cancer survivors and 19 caregivers. Participants discussed five themes: (1) a culture that discourages the discussion of cancer; (2) lack of support services for African American cancer survivors; (3) lack of support services for cancer caregivers; (4) need for culturally appropriate cancer resources, including resources targeted at African American women; and (5) aspects that were helpful to cancer survivors and caregivers, including connecting with other survivors and caregivers, and having strong social support networks. We gained new insight into the unmet support needs for survivors and caregivers, especially when coping with the cancer experience continuum. While some cancer and caregiver support services exist, our study reveals a great need for services that incorporate the cultural differences that exist across races.

  12. Projecting social support needs of informal caregivers in Malaysia.

    Science.gov (United States)

    Abu Bakar, Siti Hajar; Weatherley, Richard; Omar, Noralina; Abdullah, Fatimah; Mohamad Aun, Nur Saadah

    2014-03-01

    This article presents the findings of a self-report study of the consequences of being an informal caregiver in Malaysia. The aim of this exploratory study was to examine Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Data were obtained from a cross-sectional survey of informal caregivers in 2009. This sample comprised parents, spouses and/or adult siblings, and adult children, caring for their children, spouses or siblings and parents who were chronically ill and/or had a disability. Of 300 prospective participants, only 175 could be located (58%), but all those contacted agreed to participate. Respondents were randomly selected and interviewed using a structured questionnaire to identify the emotional, financial, social and physical issues consequent upon being a caregiver. Most respondents reported that their care-giving responsibilities had impacted their emotional, financial, social and/or physical well-being. Inadequate and/or uncertain income was by far the greatest concern followed in descending order by social, physical and emotional consequences. The one-way analysis of variance showed significant differences among the three categories of caregivers with respect to physical and emotional consequences. The findings show that care-giving has detrimental effects on the lives of informal caregivers, and that they are in significant need of social support to help them deal with care-giving tasks and responsibilities. Based on the findings, an integrated social support programme is proposed, tailored to the needs of informal caregivers. © 2013 John Wiley & Sons Ltd.

  13. Informal caregiving burden and perceived social support in an acute stroke care facility.

    Science.gov (United States)

    Akosile, Christopher Olusanjo; Banjo, Tosin Olamilekan; Okoye, Emmanuel Chiebuka; Ibikunle, Peter Olanrewaju; Odole, Adesola Christiana

    2018-04-05

    Providing informal caregiving in the acute in-patient and post-hospital discharge phases places enormous burden on the caregivers who often require some form of social support. However, it appears there are few published studies about informal caregiving in the acute in-patient phase of individuals with stroke particularly in poor-resource countries. This study was designed to evaluate the prevalence of caregiving burden and its association with patient and caregiver-related variables and also level of perceived social support in a sample of informal caregivers of stroke survivors at an acute stroke-care facility in Nigeria. Ethical approval was sought and obtained. Fifty-six (21 males, 35 females) consecutively recruited informal caregivers of stroke survivors at the medical ward of a tertiary health facility in South-Southern Nigeria participated in this cross-sectional survey. Participants' level of care-giving strain/burden and perceived social support were assessed using the Caregiver Strain Index and the Multidimensional Scale of Perceived Social Support respectively. Caregivers' and stroke survivors' socio-demographics were also obtained. Data was analysed using frequency count and percentages, independent t-test, analysis of variance (ANOVA) and partial correlation at α =0.05. The prevalence of care-giving burden among caregivers is 96.7% with a high level of strain while 17.9% perceived social support as low. No significant association was found between caregiver burden and any of the caregiver- or survivor-related socio-demographics aside primary level education. Only the family domain of the Multidimensional Scale of Perceived Social Support was significantly correlated with burden (r = - 0.295). Informal care-giving burden was highly prevalent in this acute stroke caregiver sample and about one in every five of these caregivers rated social support low. This is a single center study. Healthcare managers and professionals in acute care facilities

  14. The mediating effect of caregiver burden on the caregivers' quality of life.

    Science.gov (United States)

    Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

    2015-05-01

    [Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

  15. Caregiver social support quality when interacting with cancer survivors: advancing the dual-process model of supportive communication.

    Science.gov (United States)

    Harvey-Knowles, Jacquelyn; Faw, Meara H

    2018-04-01

    Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.

  16. Supporting home hospice family caregivers: Insights from different perspectives.

    Science.gov (United States)

    Ellington, Lee; Cloyes, Kristin G; Xu, Jiayun; Bellury, Lanell; Berry, Patricia H; Reblin, Maija; Clayton, Margaret F

    2018-04-01

    ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

  17. Persona Development and Educational Needs to Support Informal Caregivers.

    Science.gov (United States)

    Al Awar, Zeina; Kuziemsky, Craig

    2017-01-01

    Informal caregivers are playing an increasing role in community based care delivery. Research is needed that looks at the educational needs of informal caregivers as a precursor to HIT design to support community care delivery. A challenge is informal caregivers have very diverse educational needs. Personas are an approach to describe user characteristics as part of systems design and this approach could be used to understand and categorize the various educational needs of informal caregivers. This paper addresses this research need and provides a method for persona development and the identification of educational needs for informal caregivers.

  18. Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

    Science.gov (United States)

    Williams, Allison M; Wang, Li; Kitchen, Peter

    2016-03-01

    This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.

  19. Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships.

    Science.gov (United States)

    White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James

    2018-01-01

    There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver and

  20. Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

    Science.gov (United States)

    Holroyd-Leduc, Jayna M; McMillan, Jacqueline; Jette, Nathalie; Brémault-Phillips, Suzette C; Duggleby, Wendy; Hanson, Heather M; Parmar, Jasneet

    2017-03-01

    Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

  1. Stress and social support in caregivers of children with cerebral palsy

    Directory of Open Access Journals (Sweden)

    Alyne Kalyane Câmara de Oliveira

    2013-12-01

    Full Text Available In this study, we aimed to describe the levels of stress and perceived social support for caregivers of children with cerebral palsy (CP, as well as investigate the relationship between stress, social support, and variables related to caregivers, the environment and children, namely: the number of children, education level of caregivers, family income, behavior, and the child’s motor level. This study comprised 50 children with CP between 3 and 7.5 years old, their 50 caregivers, and 25 rehabilitation professionals who care for children in health institutions from the countryside of São Paulo state, Brazil. The following measuring instruments were used: the Gross Motor Function Classification System for Cerebral Palsy, the Lipp’s Inventory of Stress Symptoms in Adults, the Social Support Questionnaire, and a form identifying the participants. Data were analyzed using descriptive and inferential statistics by the following tests: Chi-square, Fisher exact, Mann-Whitney, Kruskal-Wallis, and Odds Ratio. The results showed stress among the participating caregivers (66%, with predominance of the resistance phase (93.9% and psychological symptoms (69.7%, low perceived social support for caregivers, concomitant with an adequate satisfaction with the support received, as well as significant relationships of stress versus social support (p = 0.017 and education level versus social support (p = 0.037. The data allow analysis of the relationship between the variables investigated and about the impact of having a child with CP in the family regarding the physical, emotional and psychological well-being of caregivers, besides providing subsidies to think of strategies at different levels of care for families of children with disabilities.

  2. The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

    Science.gov (United States)

    Roberts, Emily; Struckmeyer, Kristopher M.

    2018-01-01

    Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

  3. The effect of a social support boosting intervention on stress, coping, and social support in caregivers of children with HIV/AIDS.

    Science.gov (United States)

    Hansell, P S; Hughes, C B; Caliandro, G; Russo, P; Budin, W C; Hartman, B; Hernandez, O C

    1998-01-01

    Caring for the human immunodeficiency virus (HIV)-infected child is challenging and affects the entire family system. Studies have shown that social support can mitigate caregiver stress and enhance coping; however, social support may not always result in a positive outcome for the recipient. To measure caregiver stress, coping, and social support, and to test the effect of a social support boosting intervention on levels of stress, coping, and social support among caregivers of children with HIV/acquired immune deficiency syndrome (AIDS). An experimental design was used with monthly social support boosting interventions implemented. The stratified randomized sample included 70 primary caregivers of children with HIV/AIDS. The sample strata were seropositive caregivers (biological parents) and seronegative caregivers (foster parents and extended family members). Study measures included the Derogatis Stress Profile, Family Crisis Oriented Personal Evaluation Scale, and the Tilden Interpersonal Relationship Inventory. Data were analyzed using descriptive statistics and repeated measure MANOVA. Statistically significant differences between the experimental and control groups were found on changes in the dependent variables over time when caregiver strata were included as a factor in the analysis; no statistically significant results were found when caregiver strata were combined. Univariate Ftests indicated that the level of social support for caregivers who were seronegative in the experimental group was significantly different from seronegative caregivers in the control group and seropositive caregivers in both groups. No significant treatment group differences were found for seropositive caregivers. Seronegative caregivers derived substantial benefit from the social support boosting intervention. Seronegative caregivers who acquire a child with HIV/AIDS are confronted with a complex stressful situation; the critical need to enhance their social support is

  4. Contextual Exploration of a New Family Caregiver Support Concept for Geriatric Settings Using a Participatory Health Research Strategy.

    Science.gov (United States)

    Dorant, Elisabeth; Krieger, Theresia

    2017-11-28

    Family caregivers are the backbone of the long-term care support system within the home environment. Comprehensive caregiver support programs require collaboration and coordination within the system. A new public health concept, Vade Mecum, aims to harmonize and professionalize family caregiver support initiatives in geriatric care settings in the Euregion Maas-Rhine. Exploration of the new concept recently started in Germany to gain in-depth insight into current support and the needs of the geriatric care team and family caregivers. Within the context of an exploratory qualitative study, a participatory health research (PHR) strategy was applied to make optimal use of experience and knowledge from the system. Care professionals, engaged as co-researchers, were responsible for decisions about the research question, data collection methods and procedures of engaging family caregivers. A research team representing all professions within the geriatric department was formed. Research objectives were formulated and an appropriate mix of qualitative data collection methods consisting of interviews, focus groups and story-telling was chosen. Needs and expectations of the new concept, and practical solutions for involving family caregivers were discussed. A PHR strategy resulted in initiating a qualitative study in a geriatric care setting carried out by care professionals from the department. Knowledge was generated in a co-creative manner, and co-researchers were empowered. A comprehensive understanding of the system serves as a starting point for advancement of the new family caregiver concept.

  5. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H. van

    2012-01-01

    Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. Methods: A qualitative study, 13 caregivers participated in semi-structured interviews. Results: Professional caregiver support in

  6. Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

    NARCIS (Netherlands)

    Cardol, M.; Rijken, M.; Schrojenstein Lantman-de Valk, H.M. van

    2012-01-01

    OBJECTIVE: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes. METHODS: A qualitative study, 13 caregivers participated in semi-structured interviews. RESULTS: Professional caregiver support in

  7. Caregiver and expecting caregiver support for early peanut introduction guidelines.

    Science.gov (United States)

    Greenhawt, Matthew; Chan, Edmond S; Fleischer, David M; Hicks, Allison; Wilson, Rachel; Shaker, Marcus; Venter, Carina; Stukus, David

    2018-03-07

    Recent guidelines recommend early peanut introduction (EPI) beginning around 4 to 6 months of age in infants with severe eczema and/or egg allergy and around 6 months for all other infants. Caregiver preferences for such practices are unknown. We explored preferences for EPI and in-office allergy risk assessment (IRA) through a nationally representative survey of expecting (n = 1,000) and new caregivers of infants younger than 1 year (n = 1,000). Among a primarily female (99.7%), married (80.3%), and white (74.4%) sample, 29% had no or vague awareness of the new guidelines, 61% had no or minimal concern for their child developing food allergy, but 54% felt timing of food introduction has moderate to strong importance for developing food allergy. Only 31% expressed willingness for EPI before or around 6 months of age, with 40% reporting willingness to introduce peanut after 11 months of age, similar to tree nuts and seafood. However, 60% reported willingness to introduce egg before 8 months of age. A total of 51% and 56.8% were unwilling to allow IRA methods, such as skin testing and oral challenge, before 11 months of age, respectively. Odds of willingness to delay peanut introduction (odds ratio, 0.79; 95% confidence interval, 0.65-0.96) and undergo challenge (odds ratio, 0.67; 95% confidence interval, 0.54-0.82) after 6 months of age were lower among expecting caregivers. Among new and expecting caregivers, there is poor current willingness and questionable support for early allergenic solid food recommendations, including IRA before introduction. Willingness was better among expecting vs current caregivers. These trends underscore a need for broader formal implementation planning to facilitate early allergen introduction and maximize its preventive benefits. Copyright © 2018 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

  8. Support groups for dementia caregivers - Predictors for utilisation and expected quality from a family caregiver's point of view: A questionnaire survey PART I*

    Directory of Open Access Journals (Sweden)

    Luttenberger Katharina

    2010-07-01

    Full Text Available Abstract Background Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper. Methods The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis. Results The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement. Conclusions In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.

  9. The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

    OpenAIRE

    Roberts, Emily; Struckmeyer, Kristopher M.

    2018-01-01

    Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, m...

  10. Traumatic brain injury: unmet support needs of caregivers and families in Florida.

    Directory of Open Access Journals (Sweden)

    Christina Dillahunt-Aspillaga

    Full Text Available Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.

  11. Intervention to improve social and family support for caregivers of dependent patients: ICIAS study protocol.

    Science.gov (United States)

    Rosell-Murphy, Magdalena; Bonet-Simó, Josep M; Baena, Esther; Prieto, Gemma; Bellerino, Eva; Solé, Francesc; Rubio, Montserrat; Krier, Ilona; Torres, Pascuala; Mimoso, Sonia

    2014-03-25

    Despite the existence of formal professional support services, informal support (mainly family members) continues to be the main source of eldercare, especially for those who are dependent or disabled. Professionals on the primary health care are the ideal choice to educate, provide psychological support, and help to mobilize social resources available to the informal caregiver.Controversy remains concerning the efficiency of multiple interventions, taking a holistic approach to both the patient and caregiver, and optimum utilization of the available community resources. .For this reason our goal is to assess whether an intervention designed to improve the social support for caregivers effectively decreases caregivers burden and improves their quality of life. CONTROLled, multicentre, community intervention trial, with patients and their caregivers randomized to the intervention or control group according to their assigned Primary Health Care Team (PHCT). Primary Health Care network (9 PHCTs). Primary informal caregivers of patients receiving home health care from participating PHCTs. Required sample size is 282 caregivers (141 from PHCTs randomized to the intervention group and 141 from PHCTs randomized to the control group. a) PHCT professionals: standardized training to implement caregivers intervention. b) Caregivers: 1 individualized counselling session, 1 family session, and 4 educational group sessions conducted by participating PHCT professionals; in addition to usual home health care visits, periodic telephone follow-up contact and unlimited telephone support. Caregivers and dependent patients: usual home health care, consisting of bimonthly scheduled visits, follow-up as needed, and additional attention upon request.Data analysisDependent variables: Caregiver burden (short-form Zarit test), caregivers' social support (Medical Outcomes Study), and caregivers' reported quality of life (SF-12)INDEPENDENT VARIABLES: a) Caregiver: sociodemographic data

  12. [Social media monitoring of asthmatic children treated in a specialized program: Parents and caregivers expectations].

    Science.gov (United States)

    Urrutia-Pereira, Marilyn; Ávila, Jennifer Bg; Cherrez-Ojeda, Ivan; Ivancevich, Juan Carlos; Solé, Dirceu

    2015-01-01

    Social media has been used in support of patients with asthma. However, it remains unclear what are the expectations of parents or caregivers of asthmatic patients. To evaluate the expectations of parents or caregivers of asthmatic children treated at Children's Asthma Prevention Program (PIPA), Uruguaiana, RS, in relation to the use of social media. An observational, descriptive, cross-sectional survey of parents or caregivers of children seen at Children's Asthma Prevention Program through responses to a written questionnaire on the use of new technologies and different applications to enhance information about asthma. 210 parents or caregivers (median age: 25 years; age range: 18-42 years of patients were enrolled. The mean age of their children was 7.3 years (age range: 2 to 18 years), the mean duration of asthma was 4.7 years and 65% of parents/caregivers of these children had less than eight years of schooling. Most of them (72%) had no access to the Internet via cell/mobile phones and only 18% actively used to gathered information about asthma by internet. There was high interest (87%) in receiving information via social media. Parents or caregivers of children attending the PIPA program expressed high interest in using social media. However, few use it to control their children's disease. While providing a great benefit to use social media as a mean of communication in health, the content needs to be monitored for reliability and quality. The privacy of users (doctors and patients) must be preserved and it is very important to facilitate the access to Internet.

  13. [Learning about the social support provided to the family caregiver assisting a family dependent].

    Science.gov (United States)

    Nardi, Edileuza de Fátima Rosina; de Oliveira, Magda Lúcia Félix

    2008-03-01

    The elderly suffering disability caused by diseases need a network of support in order to continue feeling socially active. This study aims at characterizing the social support provided to the family caregiver who looks after an elderly dependent, in Brazil. A descriptive study with qualitative approach was conducted at the municipality of Jandaia do Sul, Paraná, Brazil. Data collection was performed through semi-structured interviews with 19 primary family caregivers. Data analysis was based on Thematic Analysis. The results show that when it comes to informal sources, the reference to grown up children was mostly used, while as formal ones Unidade Básica de Saúde, the Brazilian Basic Health Unit, and the team from Programa Saúde da Familia, Brazilian Pro-Family Health Program, were referred to. However, the image of Community Health Agent was the most mentioned. Thus, it is necessary to create support nets to integrate both formal and informal systems.

  14. The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers.

    Science.gov (United States)

    Kirby, Emma; Kenny, Katherine; Broom, Alex; MacArtney, John; Good, Phillip

    2017-06-21

    Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support. This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3-9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed. The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the "personal" character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support. Systematic pre-bereavement planning and careful communication about the services offered by

  15. CAREGIVER COMPLIANCE WITH PHYSICAL THERAPY HOME PROGRAM: A PILOT STUDY IN PEDIATRIC OUTPATIENT CLINICS IN KUWAIT

    Directory of Open Access Journals (Sweden)

    Maryam M. Almandil

    2017-06-01

    Full Text Available Background: Compliance depends on the caregiver and the health care professional committing to the same objectives.Compliance with the prescribed physical therapy (PT home program is a significant contributor to treatment success. Methods: One hundred caregivers were invited to fill in a questionnaire after the explanation of the procedure, and signing the consent form. The questionnaire explored factors affecting compliance including nature of the exercise, physical and emotional stresses on the caregiver, and the role of PT in teaching and counseling the caregiver. Result: Ninety-one participants out of the 100 were committed to administering the exercises with their children. Despite this, there was a discrepancy in either the frequency of repeating the exercises per day or the content of the exercise program when compared with the exercise program prescribed by the therapist. Some of the primary reasons for these differences were the pain experienced by the child when exercising (71%, having other family commitments (57%, not having the time to administer the home program (37%, and lacking skills or equipment to administer the exercises (34%. Conclusion: Adherence to treatment is a complex act that requires an understanding of treatment approach, having the confidence in one’s skills to administer the unsupervised home program and the existence of a support system both in the hospital and at home that can provide aid when needed. It is the PT role to address all these issues when prescribing a home program to meet treatment objectives.

  16. Resilience among older caregivers in rural Namibia: The role of financial status, social support and health.

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    Kalomo, Eveline Ndii; Lee, Kyoung Hag; Lightfoot, Elizabeth; Freeman, Rachel

    2018-04-23

    Namibia has one of the highest human immunodeficiency virus (HIV) prevalence rates and one of the highest rates of orphanhood in the world, and older caregivers provide much of the care to Namibians living with HIV and acquired immune deficiency syndrome (AIDS) (UNAIDS, 2014). In this study, the authors explore how financial status, social support, and health were related to the resilience of caregivers caring for people affected by HIV and AIDS in rural northern Namibia, Africa. Data were collected through a structured interview from (N = 147) caregivers from the Zambezi region. Findings from this study show that employment and physical health were significantly associated with increased resilience in older caregivers. Our findings point to the need for employment assistance and health services to improve the resilience of caregivers caring for people living with HIV and AIDS. We conclude that there is a need for more vigorous concerted efforts from public and private sector practitioners and policy makers to create more sustained formal employment opportunities and intervention programs aimed at improving the overall health of older HIV caregivers, especially those residing in rural HIV endemic communities in developing countries.

  17. A Program for Caregivers in the Workplace.

    Science.gov (United States)

    Ingersoll-Dayton, Berit; And Others

    1990-01-01

    Four demonstration sites offered educational seminar series to employed caregivers, followed by choice of service options (care planning, support group, buddy system). Increase in absenteeism and knowledge of aging services was associated with attendance at seminars. Among service options, only care planning and support groups were used by…

  18. Positive effects of a cognitive-behavioral intervention program for family caregivers of demented elderly

    Directory of Open Access Journals (Sweden)

    Patrícia Paes Araujo Fialho

    2012-10-01

    Full Text Available OBJECTIVE: It was to examine the effects of a Cognitive-Behavioral Therapy (CBT program administered to family caregivers of dementia patients. METHODS: Forty family caregivers were enrolled in a CBT intervention across eight weekly sessions. Cognitive, functional and behavioral status of patients were evaluated, as well as their own and their family caregivers' perceptions of quality of life. Specific instruments were also applied to evaluate caregiver stress level, coping, anxiety and depression. RESULTS: At the end of the program, family caregivers reported fewer neuropsychiatric symptoms among patients and an improvement in patients' quality of life. In addition, caregivers changed their coping strategies, whereas a significant decrease was observed in their anxiety levels. CONCLUSION: The CBT program employed appears to be a promising and useful tool for clinical practice, displaying positive effects on quality of life and neuropsychiatric symptoms of dementia, as well as proving beneficial for alleviating anxiety and stress in family caregivers.

  19. Examining spiritual support among African American and Caucasian Alzheimer's caregivers: A risk and resilience study.

    Science.gov (United States)

    Wilks, Scott E; Spurlock, Wanda R; Brown, Sandra C; Teegen, Bettina C; Geiger, Jennifer R

    2018-05-25

    Research shows African Americans at greater risk of developing Alzheimer's disease (AD) compared to the Caucasian population, suggesting African American AD caregivers are rising in numbers at a greater rate than Caucasian counterparts. Over a decade ago, an article in Geriatric Nursing revealed spiritual well-being differences among these caregiver groups. The purpose of this study was a quasi-follow-up, utilizing a larger caregiver sample to test spiritual support as a moderator via a risk-and-resilience framework. Secondary data analysis from a sample of 691 AD caregivers examined data on demographics and standardized measures of spiritual support, caregiver burden, and psychological resilience. One-third of the sample reported as African American. Resilience negatively regressed, though not significantly, on caregiving burden among both groups. Spiritual support positively, significantly impacted resilience among both groups, slightly stronger among African Americans. Spiritual support did not significantly moderate risk with either group. Implications for professional healthcare practice are discussed. Copyright © 2018 Elsevier Inc. All rights reserved.

  20. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis

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    del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A.; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J.

    2018-01-01

    Background Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. Objective The purpose of this review is to analyse the relationship of perceived and received social support with subjective...

  1. Trajectories of health-related quality of life among family caregivers of individuals with dementia: A home-based caregiver-training program matters.

    Science.gov (United States)

    Kuo, Li-Min; Huang, Huei-Ling; Liang, Jersey; Kwok, Yam-Ting; Hsu, Wen-Chuin; Liu, Chin-Yi; Shyu, Yea-Ing L

    To determine distinct courses of change in health-related quality of life (HRQoL) among family caregivers of individuals with dementia and how participating in a home-based caregiver-training program affects the probability of belonging to each course. Sixty three caregivers were in the intervention group, and 66 caregivers were in the control group of a single-blinded randomized clinical trial. Two distinct trajectories of HRQoL were identified: a well-functioning trajectory and a poor-functioning trajectory. Caregivers who received the training program were more likely than those who did not have a well-functioning trajectory of HRQoL over 18 months. This trajectory included bodily pain (b = 1.02, odds ratio [OR] = 2.76), general health perception (b = 1.28, OR = 3.60), social functioning (b = 1.12, OR = 3.05), vitality (b = 1.51, OR = 4.49), general mental health (b = 1.08, OR = 2.94), and mental component summary (b = 1.27, OR = 3.55). Home-based caregiver training can be considered as part of the protocol for managing patients with dementia and their caregivers. NCT02667951. Copyright © 2016 Elsevier Inc. All rights reserved.

  2. A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial.

    Science.gov (United States)

    de Wit, Jessica; Beelen, Anita; Drossaert, Constance H C; Kolijn, Ruud; van den Berg, Leonard H; Visser-Meily, Johanna M A; Schröder, Carin D

    2018-05-02

    Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress. This support program is based on an existing program for adult partners of people with cancer and is adapted to meet the needs of ALS caregivers. This study is a randomized controlled trial using a wait-list control design. One hundred and forty caregiver-patient dyads, recruited from a nationwide database and through the website of the Dutch ALS Center, will be either randomized to a support program or a wait-list control group. The blended intervention is based on Acceptance and Commitment Therapy and consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. The intervention can be worked through in 8 weeks. The effectiveness and the participants' satisfaction with the intervention will be evaluated using a mixed method design. Caregivers and patients will be asked to fill in questionnaires on 4 occasions during the study: baseline, 3 months, 6 months and 9 months. The main study outcome is the psychological distress of the caregiver assessed with the Hospital Anxiety and Depression Scale. Secondary outcomes are caregiver burden, caregiver quality of life, quality of life of the patient and psychological distress of the patient. Group differences in primary and secondary outcomes at 6 months will be compared with linear mixed model analysis. In a subgroup of caregivers we will explore experiences with the support program through semi-structured interviews. Usage of the online modules will be logged

  3. Perceived stress and resilience in Alzheimer's disease caregivers: testing moderation and mediation models of social support.

    Science.gov (United States)

    Wilks, Scott E; Croom, Beth

    2008-05-01

    The study examined whether social support functioned as a protective, resilience factor among Alzheimer's disease (AD) caregivers. Moderation and mediation models were used to test social support amid stress and resilience. A cross-sectional analysis of self-reported data was conducted. Measures of demographics, perceived stress, family support, friend support, overall social support, and resilience were administered to caregiver attendees (N=229) of two AD caregiver conferences. Hierarchical regression analysis showed the compounded impact of predictors on resilience. Odds ratios generated probability of high resilience given high stress and social supports. Social support moderation and mediation were tested via distinct series of regression equations. Path analyses illustrated effects on the models for significant moderation and/or mediation. Stress negatively influenced and accounted for most variation in resilience. Social support positively influenced resilience, and caregivers with high family support had the highest probability of elevated resilience. Moderation was observed among all support factors. No social support fulfilled the complete mediation criteria. Evidence of social support as a protective, moderating factor yields implications for health care practitioners who deliver services to assist AD caregivers, particularly the promotion of identification and utilization of supportive familial and peer relations.

  4. Exploring Peer Support Needs of Caregivers for Youth with Mental Illness or Addictions Concerns in Family Navigation Services.

    Science.gov (United States)

    Markoulakis, R; Turner, M; Wicik, K; Weingust, S; Dobbin, K; Levitt, A

    2017-11-16

    Roles for peer support workers are increasingly recognized as a valuable component of mental health and addictions (MHA) services. In youth MHA care, caregivers are often closely involved in finding and accessing services and may also require support for themselves, yet caregiver peer support is not readily available in existing service delivery models. In order to understand the potential role and value of a caregiver peer support worker in a Family Navigation service, a descriptive qualitative study was conducted to explore the needs and potential value of a peer worker from caregiver client perspectives. Study findings indicate that a caregiver peer support worker can provide support for engaging in the caregiving role, utilize lived experience as a skill, and complement navigation support through lived experience. The discussion highlights implications for the implementation of a caregiver peer role at a family-focused service as well as implications for peer work within the MHA system.

  5. The relationship between social support and anxiety among caregivers of children in HIV-endemic South Africa.

    Science.gov (United States)

    Casale, Marisa; Wild, Lauren; Cluver, Lucie; Kuo, Caroline

    2014-01-01

    Caring for children can be a source of joy and fulfilment, but also a source of stress, especially for caregivers living with illness and/or coping with difficult socio-economic conditions. Risks for poor caregiver mental health are especially salient in many parts of southern Africa affected by a generalised HIV-epidemic, high rates of physical illness, difficult livelihood conditions and an increasing number of orphaned and vulnerable children in need of care. Given limited availability and low uptake of formal mental health services in South Africa, the potential protective role of informal community or "social" resources for caregiver populations requires greater attention. To our knowledge, this is the first study to quantitatively assess the relationship between social support and symptomatic anxiety among caregivers of children living in HIV-endemic southern African communities. The data are from household survey interviews with 2477 adult primary caregivers of children aged 10-17 years living in two (urban and rural) resource-deprived HIV-endemic South African communities. Hierarchical logistic regression analysis with interaction terms was conducted to assess whether HIV and other illness were significant stressors for caregiver anxiety, whether social support had main or stress-buffering protective effects on anxiety and whether gender moderated the association between social support and anxiety. Our findings showed significant main effects of social support on caregiver anxiety, but no evidence of stress-buffering effects of support or of gender moderating the support-anxiety relationship. This suggests that social support is a general mental health resource for both male and female caregivers of children in these HIV-endemic communities, regardless of whether they are facing specific stressors related to HIV or other illness. Our results highlight the importance of paying greater attention to the social environment when designing and implementing

  6. Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support.

    Science.gov (United States)

    Ong, Hui Lin; Vaingankar, Janhavi Ajit; Abdin, Edimansyah; Sambasivam, Rajeswari; Fauziana, Restria; Tan, Min-En; Chong, Siow Ann; Goveas, Richard Roshan; Chiam, Peak Chiang; Subramaniam, Mythily

    2018-01-31

    The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

  7. The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death.

    Science.gov (United States)

    Aoun, Samar M; Ewing, Gail; Grande, Gunn; Toye, Chris; Bear, Natasha

    2018-02-01

    The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  8. Effect of Educational Program on the Burden of Family Caregivers of Hemodialysis Patients

    Directory of Open Access Journals (Sweden)

    Mansoureh Ashghali Farahani

    2016-04-01

    Full Text Available Background: Studies suggest that family caregivers of hemodialysis patients experience a high level of burden, which could lead to numerous physical and psychological problems. Despite the need for adequate training and support, these caregivers are mostly neglected, and few studies have been performed in this regard. Aim: to evaluate the effect of educational programs on the home care of hemodialysis patients and burden of their family caregivers. Method: This randomized controlled clinical trial was conducted on 76 caregivers of hemodialysis patients referred to Shahid Hasheminejad Hemodialysis Center of Tehran, Iran in 2015.­ Subjects were divided into two groups of intervention and control (n=38. The intervention group received four training sessions on the home care of hemodialysis patients for two weeks, and the control group received routine care. Data were collected using the Caregiver Burden Inventory (CBI at the beginning and six weeks after the intervention­. Data analysis was performed in SPSS V.21 using Chi-square, Fisher’s exact test, independent and paired T-test, and Mann-Whitney U test. Results: In this study, no significant difference was observed between the two groups in terms of demographic characteristics. At the baseline, mean score of caregiver burden in the intervention and control groups was 88.5±11.7 and 84.9±15.1, respectively, and no significant difference was observed between the groups in this regard (P=0.30. Six weeks after the intervention, the results of independent T-test revealed a significant difference between the mean scores of caregiver burden in the intervention (58.7±6.6 and control groups (87.8±11.7 ­(P

  9. Social support mediates the association between benefit finding and quality of life in caregivers.

    Science.gov (United States)

    Brand, Charles; Barry, Lorna; Gallagher, Stephen

    2016-06-01

    The psychosocial pathways underlying associations between benefit finding and quality of life are poorly understood. Here, we examined associations between benefit finding, social support, optimism and quality of life in a sample of 84 caregivers. Results revealed that quality of life was predicted by benefit finding, optimism and social support. Moreover, the association between benefit finding and quality of life was explained by social support, but not optimism; caregivers who reported greater benefit finding perceived their social support be higher and this, in turn, had a positive effect on their overall quality of life. These results underscore the importance of harnessing benefit finding to enhance caregiver quality of life. © The Author(s) 2014.

  10. Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

    Science.gov (United States)

    Stajduhar, Kelli I; Funk, Laura; Outcalt, Linda

    2013-07-01

    Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. Data included qualitative interviews with 156 family caregivers of dying people. Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

  11. The effect of group psycho-education program on the burden of family caregivers with multiple sclerosis patients in Isfahan in 2013-2014.

    Science.gov (United States)

    Pahlavanzadeh, Saeid; Dalvi-Isfahani, Fariba; Alimohammadi, Nasrollah; Chitsaz, Ahmad

    2015-01-01

    Lack of adequate training and support of primary caregivers of multiple sclerosis (MS) patients is the major factor in causing stress, anxiety, and increase of burden. Therefore, the treatment team members such as psychiatric nurses can help these vulnerable people overcome psychiatric pressures effectively not only through their care and referral role but also through their supportive characteristic, which helps the patients improve their clinical status, together with their social, familial, and work adaptation. Therefore, the researcher tried to identify the effect of a group psycho-education program on the burden family caregivers with MS patients. This is a two-group three-stage clinical trial. The researcher referred to the heads of neurology clinics to present the purpose of the study and to start the sampling. The neurology clinics of AL Zahra University Hospital, and also a Private Neurology Clinic were selected to collect the data of the study. The subjects were randomly selected, and then, assigned to two groups of study and control. Independent t-test showed a significant reduction in family caregivers' burden immediately after and 1-month after intervention in the study group, compared to control. Repeated measure ANOVA showed a significant reduction in caregivers' burden mean score in the study group (P family caregivers' burden, it is recommended to develop and design other programs for the family caregivers of the patients with MS.

  12. Interventions for supporting informal caregivers of patients in the terminal phase of a disease.

    Science.gov (United States)

    Candy, Bridget; Jones, Louise; Drake, Robyn; Leurent, Baptiste; King, Michael

    2011-06-15

    Patients in the terminal phase of a disease may have complex needs. It is often family and friends who play a central role in providing support, despite health professional input and regardless of whether the patient is at home or elsewhere. Such informal caring may involve considerable physical, psychological, and economic stresses. A range of supportive programmes for caregivers is being developed including psychological support and practical assistance. To assess the effects of supportive interventions that aim to improve the psychological and physical health of informal caregivers of patients in the terminal phase of their illness. We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 2 2010); MEDLINE (1950 to May 2010); EMBASE (1980 to May 2010); PsycINFO (1872 to May 2010); CINAHL (1937 to May 2010); National Health Service Research Register (2000 to November 2008) and Dissertation Abstracts (1716 to May 2010). We searched the reference lists of relevant studies; contacted experts; and handsearched journals. Randomised controlled trials (RCTs) of interventions to support adults who were caring for a friend or relative with a disease in the terminal phase. Interventions could include practical and emotional support and/or the facilitation of coping skills. Interventions could support caregivers indirectly via patient care. Two authors independently screened citations against the selection criteria. Data were extracted by one author and checked by another. This included extraction of any adverse effects. Risk of bias assessment was undertaken by two authors. We contacted trial authors to obtain missing information. Trial data were combined, where appropriate, on the review's primary outcomes. We included eleven RCTs involving 1836 caregiver participants. Nine interventions were delivered directly to the caregiver. Seven of these provided support in the caring role, another involved a family life review, and one

  13. Primary caregivers of in-home oxygen-dependent children: predictors of stress based on characteristics, needs and social support.

    Science.gov (United States)

    Wang, Kai-Wei K; Lin, Hung-Ching; Lee, Chin-Ting; Lee, Kuo-Sheng

    2016-07-01

    To identify the predictors of primary caregivers' stress in caring for in-home oxygen-dependent children by examining the association between their levels of stress, caregiver needs and social support. Increasing numbers of primary caregivers of oxygen-dependent children experience caregiving stress that warrants investigation. The study used a cross-sectional design with three psychometric scales - Modified-Parenting Stress Index, Caregiver Needs Scale and Social Support Index. The data collected during 2010-2011 were from participants who were responsible for their child's care that included oxygen therapy for ≧6 hours/day; the children's ages ranged from 3 months-16 years. Descriptive statistics and multivariable linear regression were used. A total of 104 participants (M = 34, F = 70) were recruited, with an average age of 39·7 years. The average age of the oxygen-dependent children was 6·68 years and their daily use of oxygen averaged 11·39 hours. The caregivers' overall levels of stress were scored as high and information needs were scored as the highest. The most available support from family and friends was emotional support. Informational support was mostly received from health professionals, but both instrumental and emotional support were important. Levels of stress and caregiver needs were significantly correlated. Multivariable linear regression analyses identified three risk factors predicting stress, namely, the caregiver's poor health status, the child's male gender and the caregiver's greater financial need. To support these caregivers, health professionals can maintain their health status and provide instrumental, emotional, informational and financial support. © 2016 John Wiley & Sons Ltd.

  14. Do informal caregivers for elderly in the community use support measures? A qualitative study in five European countries.

    Science.gov (United States)

    Willemse, Evi; Anthierens, Sibyl; Farfan-Portet, Maria Isabel; Schmitz, Olivier; Macq, Jean; Bastiaens, Hilde; Dilles, Tinne; Remmen, Roy

    2016-07-16

    Informal caregivers are essential figures for maintaining frail elderly at home. Providing informal care can affect the informal caregivers' physical and psychological health and labour market participation capabilities. They need support to prevent caregiver burden. A variety of existing support measures can help the caregiver care for the elderly at home, but with some limitations. The objective of this review was to explore the experiences of informal caregivers caring for elderly in the community with the use of supportive policy measures in Belgium and compare these to the experiences in other European countries. An empirical qualitative case study research was conducted in five European countries (Belgium, The Netherlands, Luxembourg, France and Germany). Semi-structured interviews were conducted with informal caregivers and their dependent elderly. Interview data from the different cases were analysed. In particular data from Belgium was compared to data from the cases abroad. Formal services (e.g. home care) were reported to have the largest impact on allowing the caregiver to care for the dependent elderly at home. One of the key issues in Belgium is the lack of timely access to reliable information about formal and informal services in order to proactively support the informal caregiver. Compared to the other countries, informal caregivers in Belgium expressed more difficulties in accessing support measures and navigating through the health system. In the other countries information seemed to be given more timely when home care was provided via care packages. To support the informal caregiver, who is the key person to support the frail elderly, fragmentation of information regarding supportive policy measures is an important issue of concern.

  15. Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

    Science.gov (United States)

    Ivey, Susan L; Laditka, Sarah B; Price, Anna E; Tseng, Winston; Beard, Renée L; Liu, Rui; Fetterman, David; Wu, Bei; Logsdon, Rebecca G

    2013-11-01

    We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

  16. Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients.

    Science.gov (United States)

    Jukic P, Nikolina; Gagliardi, Cristina; Fagnani, Donata; Venturini, Claudia; Orlandoni, Paolo

    2017-08-01

    The purpose of this study was to comprehend and describe the views, experiences and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition. The objective was to gather empirical evidence to improve the delivery of Home Enteral Nutrition for old patients taking into account the caregivers' support needs. A qualitative methodology with focus groups as data collection method was used to collect the testimonies of 30 informal and formal caregivers of older patients treated with Home Enteral Nutrition by the Clinical Nutrition Service of INRCA (Ancona) during 2014. Quantitative methodology was used to collect socio-demographic data. Partially modified Silver's "Home Enteral Nutrition Caregiver Task Checklist" was used to identify training needs. The constant comparison method was used to code and categorize data and to develop themes of focus groups. Simple descriptive statistics were used to summarize questionnaires. Five main themes were identified from focus groups: acceptance of the therapy, skill acquisition process, need for psychological and practical support at home from healthcare professionals, lifestyle adaptation, affirmation of life and family. All caregivers testified the initial fear and refusal to manage the nutrition pump and the therapy. They expressed the need to be trained gradually, starting during a patient's hospitalization, and continuing in the community. With reference to their overall QoL, it emerged that informal caregivers suffered mostly from the reduction of their free time while formal caregivers suffered social isolation and psychological burden. For both groups the monthly home visit was the most important element of the HEN service. Informal caregivers highlighted the importance of having their loved ones at home. Unsatisfied training needs were identified by the modified Silver's "Home Enteral Nutrition Caregiver Task Checklist". This qualitative study underlined the challenges and adaptations of

  17. Reiki training for caregivers of hospitalized pediatric patients: a pilot program.

    Science.gov (United States)

    Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A; Towle, Cara B; Doorenbos, Ardith Z

    2013-02-01

    To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant's feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child's care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. Copyright © 2012 Elsevier Ltd. All rights reserved.

  18. Linear units improve articulation between social and physical constructs: An example from caregiver parameterization for children supported by complex medical technologies

    Science.gov (United States)

    Bezruczko, N.; Stanley, T.; Battle, M.; Latty, C.

    2016-11-01

    Despite broad sweeping pronouncements by international research organizations that social sciences are being integrated into global research programs, little attention has been directed toward obstacles blocking productive collaborations. In particular, social sciences routinely implement nonlinear, ordinal measures, which fundamentally inhibit integration with overarching scientific paradigms. The widely promoted general linear model in contemporary social science methods is largely based on untransformed scores and ratings, which are neither objective nor linear. This issue has historically separated physical and social sciences, which this report now asserts is unnecessary. In this research, nonlinear, subjective caregiver ratings of confidence to care for children supported by complex, medical technologies were transformed to an objective scale defined by logits (N=70). Transparent linear units from this transformation provided foundational insights into measurement properties of a social- humanistic caregiving construct, which clarified physical and social caregiver implications. Parameterized items and ratings were also subjected to multivariate hierarchical analysis, then decomposed to demonstrate theoretical coherence (R2 >.50), which provided further support for convergence of mathematical parameterization, physical expectations, and a social-humanistic construct. These results present substantial support for improving integration of social sciences with contemporary scientific research programs by emphasizing construction of common variables with objective, linear units.

  19. "Anonymous Meltdown": Content Themes Emerging in a Nonfacilitated, Peer-only, Unstructured, Asynchronous Online Support Group for Family Caregivers.

    Science.gov (United States)

    Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R

    2017-12-01

    By providing care for loved ones in the home, family caregivers save millions of dollars for our overtaxed healthcare system. Support groups can lighten the psychological burden of caregiving. Nonprofessionally facilitated (or peer) online caregiver support groups can help meet a critical need in healthcare as a low-cost resource for caregivers. Online caregiver peer support groups can promote the health and well-being of family caregivers and, by extension, the patients themselves, resulting in cost-savings for society. A better understanding of these types of groups is of critical importance, given the unrelenting pace of demographic shift in the United States. The purpose of this study was to examine content themes emerging from an unstructured, asynchronous online peer support group for family caregivers of people with chronic illness. Qualitative content analysis was used, yielding six themes: "experiencing the emotional toll," "need for catharsis/venting," "finding the silver linings," "seeking specific advice/problem solving," "realizing home is no longer a haven," and "adapting to the caregiver role." The themes reflect what emerged organically in an online support group that was not professionally facilitated or structured in any way. Heterogeneity in the relationship between caregivers and care recipients may negatively affect outcomes and requires further study.

  20. Facilitating out-of-home caregiving through health information technology: survey of informal caregivers' current practices, interests, and perceived barriers.

    Science.gov (United States)

    Zulman, Donna M; Piette, John D; Jenchura, Emily C; Asch, Steven M; Rosland, Ann-Marie

    2013-07-10

    Many patients with chronic conditions are supported by out-of-home informal caregivers-family members, friends, and other individuals who provide care and support without pay-who, if armed with effective consumer health information technology, could inexpensively facilitate their care. We sought to understand caregivers' use of, interest in, and perceived barriers to health information technology for out-of-home caregiving. We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers' technology use for caregiving. Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients' health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving. Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers' interest

  1. Effectiveness of a psychoeducational skill training DVD program to reduce stress in Chinese American dementia caregivers: results of a preliminary study.

    Science.gov (United States)

    Gallagher-Thompson, Dolores; Wang, Peng-Chih; Liu, Weiling; Cheung, Vinnie; Peng, Rebecca; China, Danielle; Thompson, Larry W

    2010-04-01

    Prior research (Gallagher-Thompson, D., Gray, H., Tang, P., Pu, C.-Y., Tse, C., Hsu, S., et al. (2007). Impact of in-home intervention versus telephone support in reducing depression and stress of Chinese caregivers: Results of a pilot study. American Journal of Geriatric Psychiatry, 15, 425-434.) found that an in-home behavioral management program, derived conceptually from cognitive behavioral theories (CBT), was effective in reducing caregiver related stress and depressive symptoms in Chinese American dementia caregivers (CGs). Results were promising, but a more cost-effective intervention is needed to serve this growing population. Past work also found that a psychoeducational videotaped training program based on CBT was effective in reducing stress due to caregiving in Caucasian and African American dementia family CGs (Steffen, 2000, Anger management for dementia caregivers: A preliminary study using video and telephone interventions. Behavior Therapy, 31, 281-299.). To date no research has been conducted using a technological medium to deliver a similar kind of intervention to Chinese American caregivers. The present study evaluated the effectiveness of a similar but culturally "tailored" program in which 70 CGs were randomly assigned to a 12-week CBT skill training program delivered on a DVD, or to a general educational DVD program on dementia. Both were available in Mandarin Chinese or English as preferred. Pre post change analyses indicated that CGs did not differ on change in level of negative depressive symptoms, but positive affect was higher, and patient behaviors were appraised as less stressful and bothersome, for CGs in the CBT skill training program. They were also more satisfied with the program overall and reported that they believed they were able to give care more effectively. Results encourage further development of theoretically based interventions, delivered using modern technology, for this ever increasing group of CGs.

  2. Social support and subjective burden in caregivers of adults and older adults: A meta-analysis.

    Science.gov (United States)

    Del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J

    2018-01-01

    Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. The purpose of this review is to analyse the relationship of perceived and received social support with subjective burden among informal caregivers of an adult or older adult. A systematic search was carried out up to September 2017 in the following databases: MEDLINE (PubMed), CINAHL, EMBASE, PsycINFO), Scopus and ISI Proceedings, and a meta-analysis was performed with the results of the selected and included studies. Fifty-six studies were included in the meta-analysis, which provided 46 independent comparisons for perceived support and 16 for received support. Most of these studies were cross-sectional. There was a moderate, negative association of perceived social support on subjective burden (r = -0.36; CI 95% = -0.40, -0.32) and a very small, negative association of received support on subjective burden (r = -0.05; CI 95% = -0.095, -0.001). 1) perceived and received support are not redundant constructs, 2) the relationships between social support and subjective burden depend on whether the social support is measured as perceived or received, 3) the relationship of perceived social support with subjective burden has a bigger effect size than that of received social support, the relation between received support and subjective burden being clinically irrelevant, 4) perceived social support may be a good predictor of subjective burden. Our findings broadly support interventions promoting social support in caregivers to prevent or alleviate subjective burden, and specifically, to intervene on the promotion of perceived social support more than on the promotion of received social support when preventing or

  3. Correlates of caregiver burden among family caregivers of older Korean Americans.

    Science.gov (United States)

    Casado, Banghwa; Sacco, Paul

    2012-05-01

    Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

  4. A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial.

    Science.gov (United States)

    Belgacem, Bénédicte; Auclair, Candy; Fedor, Marie-Christine; Brugnon, David; Blanquet, Marie; Tournilhac, Olivier; Gerbaud, Laurent

    2013-12-01

    The French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden. A multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study. 67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers. An educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay. Copyright © 2013 Elsevier Ltd. All rights reserved.

  5. Educational program in oral health for caregivers on the oral hygiene of dependent elders

    Directory of Open Access Journals (Sweden)

    Jéssica Damares LAGO

    Full Text Available Abstract Objective Due increased number of elders living in long-term care institutions, actions designs to improve their oral health are essential. Thus, the aim of this study was to evaluate the impact of an educational program for the caregivers through the assessment of the oral hygiene of institutionalized elders. Material and method The education program consisted in lectures to caregivers about oral health that were performed once a month. The subjects were 40 functionally dependent institutionalized elders and 14 caregivers. Hygiene habits, plaque index, and tongue coating/discoloration of the elders were measured before the educational program (baseline- T0 and after 6 (T1, 12 (T2, 18 (T3 and 24 months (T4. Caregivers answered questions about their knowledge, doubts and implementation of dental care (T0 to T4. Result After analyzing the data (Friedman, Chi-square and Spearman α = 0.05, a gradual improvement in the oral hygiene of the subjects was observed, with an increased frequency of brushing (p=0.0005, a change in the brush type (p=0.0065 and a reduction in the plaque index (p<0.05 and tongue coating (p<0.05. Caregivers showed a marked improvement in their dental care knowledge. Conclusion It was concluded that the educational program for caregivers had a positive impact in the oral health of institutionalized elderly observed by the increased in the effectiveness of oral hygiene parameters such as plaque index and tongue coating, contributing to the knowledge gain in hygiene by caregivers.

  6. The effectiveness of a group psycho-educational program on family caregiver burden of patients with mental disorders

    Directory of Open Access Journals (Sweden)

    Navidian Ali

    2012-08-01

    Full Text Available Abstract Background Brief family intervention may have a positive impact on family caregivers for patients with mental disorders. We assessed the effectiveness of a group psycho-educational program on family caregivers for patients with schizophrenia and mood disorders. Methods This randomized controlled trial was performed on 100 caregivers for patients with mental disorders attending the Isfahan Behavioral Sciences Research Center (IBSRC, in Isfahan, Iran. One hundred family caregivers of patients with schizophrenia (n = 50 and mood disorders (n = 50 were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed for 3 months. Caregiver burden was assessed using the Zarit Burden Interview Results The mean scores of the Zarit caregiver burden decreased significantly for the group that participated in the psycho-educational program, while scores in the control group did not change significantly. Conclusions This group intervention program was effective to reduce the caregiver burden for both categories of mental disorders in the Iranian population. This group intervention program may improve the quality of life of patients and caregivers by improving the standards of care giving. Trial registration RCT registration number: IRCT138804272200N

  7. Characteristics of the spouse caregiving experience: Comparison between early- and late-onset dementia.

    Science.gov (United States)

    Wawrziczny, Emilie; Berna, Guillaume; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

    2017-06-20

    To investigate the characteristics of the caregiving experience according to age at onset of dementia to adapt support programs. Fifty-seven spouse caregivers of persons with early-onset dementia (PEOD) and 93 spouse caregivers of persons with late-onset dementia (PLOD) participated. The characteristics of the caregiving experience were assessed using questionnaires. We compared the two groups according to age at onset of the disease using a multivariate test, Pillai's Trace test. The analysis showed that there were similarities and differences between the two groups of spouse caregivers. All spouse caregivers were confident in their caregiving role and fairly well prepared for future needs and reported mild depressive and anxious symptoms. However, they lacked informal support, had low confidence in requesting respite care and reported effects on their health. Compared to spouse caregivers of PLOD, spouse caregivers of PEOD had more severe perceptions of the cognitive disorders of persons with dementia (PWD) and had a better sense of preparedness and knowledge of services. Spouse caregivers of PLOD were more confident in their ability to control disturbing thoughts. The results suggest that programs should provide information on support networks to improve preparedness for spouse caregivers of PLOD as well as emphasizing positive coping strategies for caregivers of PEOD to maintain good-quality relationships with PWD, which influences the perception of the symptoms. For both groups, family relationships should be considered.

  8. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a qualitative systematic review

    DEFF Research Database (Denmark)

    Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard

    Introduction: Support groups are considered an effective and economical way to relieve informal caregivers stress and burden. Research shows, that participating in support groups seems to be beneficial for the informal caregivers, but there are no significant improvements in feelings of stress...... and burden. It is unclear how support groups can produce a meaningful and optimal outcome for the informal caregivers. Aim: To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. Method: A systematic literature review...... that through comparison and sharing positive and negative emotions, the members of the support group are able to take on and maintain the role as caregiver....

  9. The Distribution of Caregiver Attention in a Group Program for Young Children.

    Science.gov (United States)

    Hildebrandt, Katherine A.; Cannan, Teresa

    1985-01-01

    Experienced and volunteer caregivers' interactions with young children in a group program were observed to determine if children with varying characteristics were given different amounts of attention. Results indicated that caregivers pay varying amounts of attention to individual children--especially in terms of physical attractiveness and…

  10. A web-based program for informal caregivers of persons with Alzheimer's disease: an iterative user-centered design.

    Science.gov (United States)

    Cristancho-Lacroix, Victoria; Moulin, Florence; Wrobel, Jérémy; Batrancourt, Bénédicte; Plichart, Matthieu; De Rotrou, Jocelyne; Cantegreil-Kallen, Inge; Rigaud, Anne-Sophie

    2014-09-15

    Web-based programs have been developed for informal caregivers of people with Alzheimer's disease (PWAD). However, these programs can prove difficult to adopt, especially for older people, who are less familiar with the Internet than other populations. Despite the fundamental role of usability testing in promoting caregivers' correct use and adoption of these programs, to our knowledge, this is the first study describing this process before evaluating a program for caregivers of PWAD in a randomized clinical trial. The objective of the study was to describe the development process of a fully automated Web-based program for caregivers of PWAD, aiming to reduce caregivers' stress, and based on the user-centered design approach. There were 49 participants (12 health care professionals, 6 caregivers, and 31 healthy older adults) that were involved in a double iterative design allowing for the adaptation of program content and for the enhancement of website usability. This process included three component parts: (1) project team workshops, (2) a proof of concept, and (3) two usability tests. The usability tests were based on a mixed methodology using behavioral analysis, semistructured interviews, and a usability questionnaire. The user-centered design approach provided valuable guidelines to adapt the content and design of the program, and to improve website usability. The professionals, caregivers (mainly spouses), and older adults considered that our project met the needs of isolated caregivers. Participants underlined that contact between caregivers would be desirable. During usability observations, the mistakes of users were also due to ergonomics issues from Internet browsers and computer interfaces. Moreover, negative self-stereotyping was evidenced, when comparing interviews and results of behavioral analysis. Face-to-face psycho-educational programs may be used as a basis for Web-based programs. Nevertheless, a user-centered design approach involving targeted

  11. A year-long caregiver training program to improve neurocognition in preschool Ugandan HIV-exposed children.

    Science.gov (United States)

    Boivin, Michael J; Bangirana, Paul; Nakasujja, Noeline; Page, Connie F; Shohet, Cilly; Givon, Deborah; Bass, Judith K; Opoka, Robert O; Klein, Pnina S

    2013-05-01

    Mediational intervention for sensitizing caregivers (MISC) is a structured program enabling caregivers to enhance their child's cognitive and emotional development through daily interactions. The principal aim was to evaluate if a year-long MISC caregiver training program produced greater improvement in child cognitive and emotional development compared with a control program. One hundred and nineteen uninfected HIV-exposed preschool children and their caregivers were randomly assigned to 1 of 2 treatment arms: biweekly MISC training alternating between home and clinic for 1 year or a health and nutrition curriculum. All children were evaluated at baseline, 6 months, and 1 year with the Mullen Early Learning Scales, Color-Object Association Test for memory, and Achenbach Child Behavior Checklist for psychiatric symptoms. Caregivers were evaluated on the same schedule with the Hopkins Symptoms Checklist-25 for depression and anxiety. The treatment arms were compared using repeated-measures analysis of covariance with child age, gender, weight, socioeconomic status, caregiving quality, caregiver anxiety, and caregiver education as covariates. The MISC children had significantly greater gains compared to controls on the Mullen Receptive and Expressive Language development, and on the Mullen composite score of cognitive ability. Color-Object Association Test total memory for MISC children was marginally better than controls. No Achenbach Child Behavior Checklist differences between the groups were noted. Caldwell Home Observation for Measurement of the Environment scores and observed mediational interaction scores from videotapes measuring caregiving quality also improved significantly more for the MISC group. The MISC enhanced cognitive performance, especially in language development. These benefits were possibly mediated by improved caregiving and positive emotional benefit to the caregiver.

  12. Educational Support Group in Changing Caregivers' Psychological Elder Abuse Behavior toward Caring for Institutionalized Elders

    Science.gov (United States)

    Hsieh, Hsiu-Fang; Wang, Jing-Jy; Yen, Maiofen; Liu, Tzu-Ti

    2009-01-01

    Institutionalized elderly who are frail and dependent are vulnerable to be abused by overwhelmed caregivers especially caregiver psychological abusive behavior is a growing but hidden problem with few evidence-based interventions. The purpose of this study was to examine the effectiveness of an educational support group in alleviating caregiver's…

  13. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review

    DEFF Research Database (Denmark)

    Lauritzen, Jette; Pedersen, Preben Ulrich; Sørensen, Erik Elgaard

    2015-01-01

    of participants: Informal caregivers of older adults aged 65 years and over with dementia. The informal caregiver was a family member, and care was performed at home. Phenomena of interest: How the informal caregivers perceived the meaningfulness of participating in support groups. The setting was all locations......BACKGROUND Informal caregivers who perform at-home care of older people with dementia might have feelings of a meaningless existence, burden, anxiety, stress and fatigue. Support groups are considered an especially effective and economical way to relieve informal caregivers’ stress and burden......, although it is unclear if participating in group meetings produces a meaningful outcome for the informal caregiver. OBJECTIVES To identify the meaningfulness of participating in support groups for informal caregivers of older adults with dementia living in their own home. INCLUSION CRITERIA Types...

  14. Usages of Computers and Smartphones to Develop Dementia Care Education Program for Asian American Family Caregivers.

    Science.gov (United States)

    Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen

    2017-10-01

    Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.

  15. Family functioning in severe brain injuries: correlations with caregivers' burden, perceived social support and quality of life.

    Science.gov (United States)

    Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara

    2015-01-01

    Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.

  16. Video teaching program on management of colostomy: Evaluation of its impact on caregivers

    Directory of Open Access Journals (Sweden)

    Heena Dabas

    2016-01-01

    Full Text Available Context: Care of a child having colostomy has not been institutionalized for a long time for economic and administrative reasons. After stoma formation, stoma care has to be provided to the child by caregivers at home. Hence, caregivers need to be provided with ongoing education and support, commencing from preoperative teaching to discharge from the hospital and home care. Aims: The aims of this study were to develop video-based learning resource material and to evaluate its effectiveness in terms of knowledge and skill attainment by caregivers. Settings and Design: The study design was time series, one group pretest and post test. This was conducted among 30 caregivers attending pediatric surgery outpatients and indoor departments of a tertiary level care center. Materials and Methods: A video teaching program (VTP related to pediatric colostomy was developed and used to teach the caregivers about colostomy care. Pretested and validated knowledge questionnaire, observational checklist, and stoma assessment scale (SAS were used to assess the knowledge and skills of caregivers before and after the administration of VTP immediately (post test 1 after and 2 weeks (post test 2 after the intervention. Statistical Analysis Used: Repeated measures analysis of variance (ANOVA, Bonferroni correction, Mann-Whitney U test, and Kruskal-Wallis test were used. Results: There were significant increases in knowledge (from 10.9 ± 2.5 to 16.4 ± 1.67 and 15.9 ± 4.02, P = 0.001, maximum score 20 and skill scores as assessed by the observation checklist (from 5.6 ± 2.0 to 9.8 ± 1.6 and 8.6 ± 2.1, P = 0.001, maximum score 12 immediately after and 2 weeks after the VTP. However, a decline in skills was observed at 2 weeks when compared with immediate scores, as measured by the observation checklist. There was no significant increase in the skill scores of caregivers as measured by SAS at 2 weeks compared to the immediate scores. Conclusion: The VTP was

  17. Stressors and Caregivers' Depression: Multiple Mediators of Self-Efficacy, Social Support, and Problem-Solving Skill.

    Science.gov (United States)

    Tang, Fengyan; Jang, Heejung; Lingler, Jennifer; Tamres, Lisa K; Erlen, Judith A

    2015-01-01

    Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem solving in mediating the relationships between caregiver stressors and depressive symptoms. Using a sample of 91 family caregivers, we tested simultaneously multiple mediators between caregiver stressors and depression. Results indicate that self-efficacy mediated the pathway from daily hassles to depression. Findings point to the importance of improving self-efficacy in psychosocial interventions for caregivers of older adults with memory loss.

  18. Family caregivers in rural Uganda: the hidden reality.

    Science.gov (United States)

    Kipp, Walter; Tindyebwa, Denis; Rubaale, Tom; Karamagi, Ednah; Bajenja, Ellen

    2007-01-01

    We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.

  19. Health sciences library outreach to family caregivers: a call to service.

    Science.gov (United States)

    Howrey, Mary M

    2018-04-01

    This commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1) advocacy, (2) resource building, and (3) programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM) through the NLM 4 Caregivers program.

  20. Health sciences library outreach to family caregivers: a call to service

    Directory of Open Access Journals (Sweden)

    Mary M. Howrey

    2018-04-01

    Full Text Available This commentary discusses the information needs of family caregivers and care recipients in the United States. Health sciences library services and outreach activities that support family caregivers include: (1 advocacy, (2 resource building, and (3 programming and education. Ethical issues related to the privacy and confidentiality of clients are outlined in the commentary for information service providers. Also, continuing professional education resources are identified to assist librarians in providing high-quality information services for this special family caregiver population, such as those designed by the National Library of Medicine (NLM through the NLM 4 Caregivers program.

  1. Assistance and Support of Primary Caregivers through an eService Platform

    Directory of Open Access Journals (Sweden)

    Claudia I. Martínez-Alcalá

    2018-02-01

    Full Text Available The increasing human longevity around the world calls for new attention models in which the primary caregiver plays a crucial role as a source of care supply. However, primary caregivers’ lack of training, along with high levels of stress, depression and anxiety, can have a negative impact on both the caregiver’s health and the development of caregiving duties. Hence, the objective of the present article is to introduce the eCuidador platform, an innovative tool that seeks to provide assistance and support to primary caregivers by means of a variety of services available in the cloud with the aim of improving caregivers’ health and quality of life. Likewise, we present the results obtained from the pilot test validation, in which the evaluation of the following parameters was carried out: Usability (12, Functionality (10, Design (11, Usefulness (12 and Satisfaction (12. The participants of this pilot test were 12 primary caregivers (91.66% women.

  2. Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver's relationship to the patient

    DEFF Research Database (Denmark)

    Lund, Line; Ross, Lone; Petersen, Morten Aagaard

    2014-01-01

    BACKGROUND: Seriously ill patients often depend on their informal caregivers to help and support them through the disease course. This study investigated informal cancer caregivers' experiences of caregiving tasks and consequences and how caregiver status (primary vs. non-primary caregiver) and t...

  3. The moderating role of social support on depression and anxiety for gastric cancer patients and their family caregivers.

    Science.gov (United States)

    Jeong, Ansuk; An, Ji Yeong

    2017-01-01

    There is a consensus that cancer care should go beyond physical care as cancer patients and their family caregivers experience psychological burden, financial difficulty, as well as social relation issues. The current study aimed to investigate the moderating impact of social support on depression and anxiety of cancer patients and their family caregivers. Gastric cancer patients and their family caregivers who visited a university medical center in Seoul were approached for participation in the study. Fifty-two pairs of adult patients and caregivers participated in the study. Along with demographic information and the physical condition of the patients, such as pre-operation cancer stage and the type of gastrectomy, social support, depression, and anxiety were measured for patients and caregivers, respectively. In the first round of analysis, patients' depression was associated with age, while patients' anxiety was related to income. On the other hand, caregivers' depression was not associated with patients' health and living arrangement. In the second round of analysis to examine the moderating effect of social support, patients' income and social support were related to depression and anxiety, but the interaction of income and social support was only observed for anxiety. For caregivers, no interaction effects were found. Social support decreased the negative effects of low income status on the patients. While the income of the families with cancer cannot be adjusted in the short-term, their experience of social support can be managed by a proper support system. Diverse implications in medical settings are discussed.

  4. Loneliness, depression, and social support of patients with cancer and their caregivers.

    Science.gov (United States)

    Şahin, Zümrüt Akgün; Tan, Mehtap

    2012-04-01

    Loneliness is a significant psychosocial concern for patients with cancer, and depression may be an antecedent to loneliness. To date, no studies have directly addressed the relationship of loneliness, depression, and social support among Turkish patients with cancer and their caregivers. The emotional responses that result from a cancer diagnosis vary and may include anxiety, anger, frustration, or depression. Because of the unexpected demands and emotions thrust on them, the caregivers of patients with cancer may be just as likely to experience loneliness or depression following a cancer diagnosis. As a result, this study sought to examine that relationship among a sample of 60 patients with cancer and 60 caregivers.

  5. Understanding differences between caregivers and non-caregivers in completer rates of Chronic Disease Self-Management Program.

    Science.gov (United States)

    Shi, J; McCallion, P; Ferretti, L A

    2017-06-01

    The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants. Secondary analysis using regression analysis to predict the outcome. Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type. Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P < 0.05). Different factors influenced the completion of CDSMP workshop for caregivers and non-caregivers. People who provide care to others appeared to have stronger motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend. Copyright © 2017. Published by Elsevier Ltd.

  6. Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer's disease.

    Science.gov (United States)

    Huang, Chiung-Yu; Sousa, Valmi D; Perng, Shao-Jen; Hwang, Mei-Yi; Tsai, Chun-Ching; Huang, Mei-Huang; Yao, Shu-Ying

    2009-02-01

    This study examined the relationships among stressors, social support, depressive symptoms and the general health status of Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Caring for a disabled or cognitively impaired person can be extremely stressful and often has adverse effects on caregivers' health. While research on caregiving in Taiwan has examined caregivers' characteristics, caregivers' need and caregivers' burden in caring for older people in general, little is known about Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Cross-sectional, descriptive correlation design. Data were obtained from a convenience sample of 103 Taiwanese informal caregivers in the South of Taiwan and analysed using descriptive statistics, Pearson's correlations, multiple and hierarchical regressions and t-tests. Caregivers who had lower household incomes and were taking care of individuals with more behaviour problems had more depressive symptoms. In addition, caregivers who were older and were taking care of individuals with more behaviour problems had worse general health. Caregivers who had more emotional support had less depressive symptoms. Caregivers of persons with Alzheimer's disease had more depressive symptoms and worse general health than caregivers of persons with stroke. Only emotional support moderated the relationship between one of the stressors (household income) and depressive symptoms. The findings of this study may be helpful for nurses and other health care professionals in designing effective interventions to minimise the negative impacts of stressors on the psychological and general health of caregivers in Taiwan.

  7. Direct and indirect effects of caregiver social support on adolescent psychological outcomes in two South African AIDS-affected communities

    Science.gov (United States)

    Casale, Marisa; Cluver, Lucie; Crankshaw, Tamaryn; Kuo, Caroline; Lachman, Jamie M.; Wild, Lauren G.

    2015-01-01

    Caregiver social support has been shown to be protective for caregiver mental health, parenting and child psychosocial outcomes. This is the first known analysis to quantitatively investigate the relationship between caregiver social support and adolescent psychosocial outcomes in HIV-endemic, resource-scarce Southern African communities. A cross-sectional household survey was conducted over 2009-2010 with 2477 South African adolescents aged 10-17 and their adult caregivers (18 years or older) in one urban and one rural community in South Africa’s KwaZulu-Natal province. Adolescent adjustment was assessed using adult caregiver reports of the Strengths and Difficulties questionnaire (SDQ), which measures peer problems, hyperactivity, conduct problems, emotional symptoms and child prosocial behavior. Hierarchical linear regressions and multiple mediation analyses, using bootstrapping procedures, were conducted to assess for: a) direct effects of more caregiver social support on better adolescent psychosocial wellbeing; and b) indirect effects mediated by better parenting and caregiver mental health. Direct associations (psocial support components within parenting interventions but also point to scope for positive intervention on adolescent psychosocial wellbeing through the broader family social network. PMID:25623784

  8. Do Maternal Caregiver Perceptions of Childhood Obesity Risk Factors and Obesity Complications Predict Support for Prevention Initiatives Among African Americans?

    Science.gov (United States)

    Alexander, Dayna S; Alfonso, Moya L; Cao, Chunhua; Wright, Alesha R

    2017-07-01

    Objectives African American maternal caregiver support for prevention of childhood obesity may be a factor in implementing, monitoring, and sustaining children's positive health behaviors. However, little is known about how perceptions of childhood obesity risk factors and health complications influence caregivers' support of childhood obesity prevention strategies. The objective of this study was to determine if childhood obesity risk factors and health complications were associated with maternal caregivers' support for prevention initiatives. Methods A convenience sample of maternal caregivers (N = 129, ages 22-65 years) completed the childhood obesity perceptions (COP) survey. A linear regression was conducted to determine whether perceptions about childhood obesity risk factors and subsequent health complications influenced caregivers' support for prevention strategies. Results Caregivers' perceptions of childhood obesity risk factors were moderate (M = 3.4; SD = 0.64), as were their perceptions of obesity-related health complications (M = 3.3; SD = 0.75); however, they perceived a high level of support for prevention strategies (M = 4.2; SD = 0.74). In the regression model, only health complications were significantly associated with caregiver support (β = 0.348; p obesity prevention efforts should emphasize health complications by providing education and strategies that promote self-efficacy and outcome expectations among maternal caregivers.

  9. An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

    OpenAIRE

    Van Houtven, Courtney Harold; Voils, Corrine I; Weinberger, Morris

    2011-01-01

    Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected...

  10. Military Stress-Busting Program for Family Caregivers

    Science.gov (United States)

    2014-05-20

    change, recognized self-worth, recognition of benefits , the timeliness of recruitment strategies, and the support provided by research staff on...made for direct recruitment included speaking at WTB monthly newcomer briefings, monthly SAMMC commander briefings, having a table at weekly bingo ...Project Number: N10-005 it. Family caregivers can definitely benefit from the stress management assistance during the treatment time of the

  11. Kenya’s Life Lessons through the Lived Experience of Rural Caregivers

    Directory of Open Access Journals (Sweden)

    Amy Cappiccie

    2017-11-01

    Full Text Available This qualitative research study used a phenomenological lens to examine the perspectives of familial caregivers in the Laikipia Region of Kenya. Through the narrative of the caregivers’ lived experience, key factors identified included social supports, rewards of caregiving, and lessons to others. Overarching basic themes centered on food insecurity, disease, rejection, lack of support, education challenges, inadequate land ownership, the absence of male support and neglect issues. These unique perspectives can contribute towards our understanding of policy and programming needs for orphaned children and familial caregivers in rural Kenya and within the rural areas of the East African context.

  12. A comparative study of care burden and social support among caregivers of persons with schizophrenia and epilepsy

    Directory of Open Access Journals (Sweden)

    Nilufer Karim

    2015-07-01

    Full Text Available Background: The caregivers of persons with epilepsy and schizophrenia undergo severe emotional, physical, financial burden due to the nature, chronicity, disability, and stigma attached to the illness. Aim: To assess the burden and social support among caregivers of persons with schizophrenia and epilepsy. Method: The study was conducted at the Out Patient Department of LokopriyaGopinathBordoloi Regional Institute of Mental Health, Tezpur. It was a comparative study. Purposive sampling technique was used for selection of the sample. The sample for the current study comprised of caregivers of 30 persons with schizophrenia and 30 persons suffering from epilepsy. A semi-structured socio-demographic data sheet, the Burden Assessment Schedule (BAS, the Social Support Questionnaire, and the General Health Questionnaire were administered to the caregivers. Results: There was no significant difference reported by the caregivers in the two groups with the entire domains of BAS and perceived social support. Physical and mental health, and caregivers’ strategy domains of BAS had significant negative correlation at 0.05 levels with perceived social support. External support, support of patient, taking responsibility, and other relation domains of BAS had significant negative correlation at the 0.01 level with perceived social support. Conclusion: While the two groups had no significant difference with the entire domains of BAS and perceived social support; physical and mental health, and caregivers’ strategy had significant negative correlation with perceived social support.

  13. Psychosocial and psychoeducational group program for main caregiver of mentally sick in early phase of schizophrenia

    Directory of Open Access Journals (Sweden)

    Estíbaliz Amaro Martín

    2012-03-01

    Full Text Available Deinstitutionalization processes in recent times have led to a new age in relations between family and mental health professionals. Care professionals were replaced, after the psychiatric reform, for care carried out by the family without the knowledge, information and skills to assume these functions. This is the situation of many families of patients with schizophrenia.Disabling features of schizophrenia usually cause depends on their families, who take care with the consequent impact on their lives. Psychosocial interventions assessing their work and want to build an alliance with them by giving them skills and coping mechanisms to reduce adverse family atmosphere, anticipate and solve problems and reduce the expressions of anger and guilt keeping appropiate expectations. However, these actions must be enforced by providing main caregivers with the skills that enable them to gain control, this is the main target of psychoeducational programs.Today there are many people in favour of such interventions in the early stages of schizophrenia. However, it is no clear how far development of these programs is supported by evidence of effectiveness. So it has proposed a psychosocial and psychoeducational program aimed at main caregivers of patients with schizophrenia in early stages. This program will be led by a psychiatric nurse in collaboration with other professionals in the interdisciplinary team; psychiatrist, clinical psychologist and social worker. It has developed clinical trial with a control group who will receive the gide for families, caregivers and people affected, "Cómo afrontar la esquizofrenia," and an experimental group will receive, in addition to the guide, the group intervention sessions.

  14. Spousal Perceptions of Marital Stress and Support among Grandparent Caregivers: Variations by Life Stage

    Science.gov (United States)

    Matzek, Amanda E.; Cooney, Teresa M.

    2009-01-01

    Few studies have examined how raising grandchildren influences the marital relationship of grandparent caregivers although half of such caregivers are married. This study used national survey data from Midlife Development in the United States (MIDUS) to contrast perceptions of spousal support and strain for grandparents who had recently provided…

  15. Correlation between depression and burden observed in informal caregivers of people suffering from dementia with time spent on caregiving and dementia severity

    DEFF Research Database (Denmark)

    Gregersen, Rikke

    2016-01-01

    The aim of thestudy is to compare data on the examined populationof informal caregivers of people sufferingfrom dementia with previous studies, aswell as to assess the correlation between (i) depressiondetermined on the basis of the Centerfor Epidemiologic Studies Depression Scaleand (ii) caregiver...... dementia fromdifferent backgrounds were evaluated usingthe Zarit Caregiver Burden Scale and the Centerfor Epidemiologic Studies DepressionScale. Demographic data about the time devotedto caregiving and the number of hoursspend on caregiving weekly were gathered. Thetype of dementia and its stage were...... registeredusing the Global Deterioration Scale (GDS).With the aid of the Statistica StatSoft program,mutual correlations between the parameterswere measured. The study was conducted withinthe framework of AAL UnderstAID – a platformthat supports and helps to understandand assist caregivers in the care...

  16. Parental Stress and Social Support of Caregivers of Children With Cerebral Palsy

    Directory of Open Access Journals (Sweden)

    Mayara Barbosa Sindeaux Lima

    2016-08-01

    Full Text Available Abstract Stress and social support are relevant variables for understanding the impact of disability on the care relationship. Thus, this study investigates the association between the parental stress index, social support indicators, and the sociodemographic variables of caregivers of children with cerebral palsy in a capital city of the Eastern Amazon. The following instruments were applied to 100 caregivers: the Sociodemographic Inventory, the Gross Motor Function Classification System, the Parenting Stress Index, and the Medical Outcomes Study Social Support Survey. For data analysis, descriptive statistics were used, in addition to techniques of multivariate analysis. It was found that most participants had high parental stress and a high perception of social support. Specific aspects of the perception of social support and sociodemographic indicators were associated with stress. This knowledge favors the design of more assertive interventions because it outlines the aspects of these variables that appear to have a more effective impact on parental stress.

  17. Caregiving experiences predict changes in spiritual well-being among family caregivers of cancer patients.

    Science.gov (United States)

    Adams, Rebecca N; Mosher, Catherine E; Cannady, Rachel S; Lucette, Aurelie; Kim, Youngmee

    2014-10-01

    Although enhanced spiritual well-being has been linked to positive mental health outcomes among family caregivers of cancer patients, little is known regarding predictors of spiritual well-being in this population. The current study aimed to examine caregiving experiences as predictors of change in family caregivers' spiritual well-being during the initial months following the patient's cancer diagnosis. Seventy family caregivers of newly diagnosed cancer patients (74% female, mean age = 59 years) participated in this longitudinal survey. Caregivers completed baseline questionnaires shortly before staying with the patient at an American Cancer Society Hope Lodge. Baseline questionnaires assessed caregiving experiences (i.e., self-esteem related to caregiving, family support for providing care, impact of caregiving on finances, and impact of caregiving on one's schedule). In addition, caregivers' spiritual well-being (i.e., meaning in life, peace, and faith) was assessed at baseline and 4-month follow-up. In univariate analyses, all caregiving experiences studied were associated with one or more aspects of spiritual well-being at 4-month follow-up. However, in the multivariate analysis, the only caregiving experience associated with aspects of spiritual well-being at 4-month follow-up was caregivers' perceptions of family support. Specifically, lack of family support was associated with lower levels of meaning and peace. Findings point to the importance of family support in facilitating the search for meaning and peace shortly after a loved one's cancer diagnosis and suggest that interventions targeting caregivers' support system may enhance their spiritual well-being. Copyright © 2014 John Wiley & Sons, Ltd.

  18. Implementation of the Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Process Evaluation of a Randomized Controlled Trial.

    Science.gov (United States)

    Boots, Lizzy Mm; de Vugt, Marjolein E; Smeets, Claudia Mj; Kempen, Gertrudis Ijm; Verhey, Frans Rj

    2017-12-19

    Caring for a family member with dementia puts caregivers at risk of overburdening. Electronic health (eHealth) support for caregivers offers an opportunity for accessible tailored interventions. The blended care self-management program "Partner in Balance" (PiB) for early-stage dementia caregivers was executed in Dutch dementia care organizations. The program combines face-to-face coaching with tailored Web-based modules. Next to an evaluation of program effectiveness, an evaluation of sampling and intervention quality is essential for the generalizability and interpretation of results. The aim of this study was to describe the process evaluation from the perspective of both family caregivers (participants) and professionals delivering the intervention (coaches) to determine internal and external validity before the effect analysis and aid future implementation. Implementation, sampling, and intervention quality were evaluated with quantitative and qualitative data from logistical research data, coach questionnaires (n=13), and interviews with coaches (n=10) and participants (n=49). Goal attainment scaling was used to measure treatment-induced change. Analyses were performed with descriptive statistics and deductive content analysis. The participation rate of eligible caregivers was 51.9% (80/154). Recruitment barriers were lack of computer and lack of need for support. Young age and employment were considered recruitment facilitators. All coaches attended training and supervision in blended care self-management. Deviations from the structured protocol were reported on intervention time, structure, and feedback. Coaches described an intensified relationship with the caregiver post intervention. Caregivers appreciated the tailored content and positive feedback. The blended structure increased their openness. The discussion forum was appreciated less. Overall, personal goals were attained after the program (T>50). Implementation barriers included lack of financing

  19. More caregiving, less working: caregiving roles and gender difference.

    Science.gov (United States)

    Lee, Yeonjung; Tang, Fengyan

    2015-06-01

    This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments. © The Author(s) 2013.

  20. Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

    Science.gov (United States)

    Wittenberg, Elaine; Goldsmith, Joy; Ferrell, Betty; Ragan, Sandra L

    2017-07-01

    Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for Caregivers TM . Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for Caregivers TM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for Caregivers TM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

  1. The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

    Science.gov (United States)

    Liu, Hsin-Yi; Huang, Lian-Hua

    2018-04-01

    The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

  2. Self-stigma among caregivers of people with mental illness: toward caregivers' empowerment.

    Science.gov (United States)

    Girma, Eshetu; Möller-Leimkühler, Anne Maria; Dehning, Sandra; Mueller, Norbert; Tesfaye, Markos; Froeschl, Guenter

    2014-01-01

    In addition to economic and material burdens, caregivers of people with mental illness are exposed to psychosocial challenges. Self-stigma is among the psychological challenges that can be exacerbated by intrinsic and/or extrinsic factors. Caregivers' self-stigma can negatively influence the patients' treatment and rehabilitation process. The objective of this study was to measure the level and correlates of self-stigma among caregivers of people with mental illness. An interviewer-administered cross-sectional study was conducted in the Jimma University Specialized Hospital Psychiatry Clinic in Ethiopia on a sample of 422 caregivers. Data were collected by trained nurses working in the clinic using a pretested questionnaire. Multivariate linear regression was performed to identify the correlates of self-stigma among caregivers of people with mental illness. The majority (70.38%) of the caregivers were male. On a scale of 0 to 15, with 0 being low and 15 being high, the average self-stigmatizing attitude score was 4.68 (±4.11). A statistically significant difference in mean self-stigma score was found between urban and rural respondents (t=3.95, PSelf-stigma of caregivers showed significant positive correlation with perceived signs of mental illness (r=0.18, Pself-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, Pself-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers' self-stigma may negatively influence patients' treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness.

  3. Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options.

    Science.gov (United States)

    Phillips, Sara S; Ragas, Daiva M; Hajjar, Nadia; Tom, Laura S; Dong, XinQi; Simon, Melissa A

    2016-01-01

    The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N=55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty-six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty-two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  4. Caregivers' requirements for in-home robotic agent for supporting community-living elderly subjects with cognitive impairment.

    Science.gov (United States)

    Faucounau, Véronique; Wu, Ya-Huei; Boulay, Mélodie; Maestrutti, Marina; Rigaud, Anne-Sophie

    2009-01-01

    Older people are an important and growing sector of the population. This demographic change raises the profile of frailty and disability within the world's population. In such conditions, many old people need aides to perform daily activities. Most of the support is given by family members who are now a new target in the therapeutic approach. With advances in technology, robotics becomes increasingly important as a means of supporting older people at home. In order to ensure appropriate technology, 30 caregivers filled out a self-administered questionnaire including questions on needs to support their proxy and requirements concerning the robotic agent's functions and modes of action. This paper points out the functions to be integrated into the robot in order to support caregivers in the care of their proxy. The results also show that caregivers have a positive attitude towards robotic agents.

  5. Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review

    NARCIS (Netherlands)

    Egan, Kieren J.; Pinto-Bruno, Ángel C.; Bighelli, Irene; Berg-Weger, Marla; van Straten, Annemieke; Albanese, Emiliano; Pot, Anne Margriet

    Introduction: Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and

  6. Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups.

    Science.gov (United States)

    Aoun, Samar M; Deas, Kathleen; Howting, Denise; Lee, Gabriel

    2015-01-01

    A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Carer Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs [corrected]. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time. An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers' feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation

  7. Spousal caregivers and persons with dementia: Increasing participation in shared leisure activities among hospital-based dementia support program participants.

    Science.gov (United States)

    DiLauro, Michelle; Pereira, Amanda; Carr, Jennifer; Chiu, Mary; Wesson, Virginia

    2015-02-20

    Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  8. Family caregivers' experiences of caring for patients with heart failure: a descriptive, exploratory qualitative study.

    Science.gov (United States)

    Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

    2015-06-01

    Living with heart failure is a complex situation for family caregivers. Many studies addressing the challenges faced by heart failure family caregivers have already been conducted in Western societal settings. Sociocultural factors and perspectives influence the family caring experience and roles. The ethnic/culturally based differences in family caring behavior make this a subject worth further exploration and clarification. This study explores the experiences of family caregivers in Iran of caring for patients with heart failure. A descriptive, exploratory, and qualitative approach was applied to gain authentic insight into the experiences of participants. Purposive sampling was used to recruit 21 family caregivers from three educational hospitals in Isfahan, Iran. Data were collected using semistructured interviews and field notes. Interviews and field notes were transcribed verbatim and concurrently analyzed. Three major themes emerged from the analysis of the transcripts: caregiver uncertainty, lack of familial and organizational support, and Allah-centered caring. Participants believed that they did not have the basic knowledge related to their disease and drugs. In addition, they received little guidance from the healthcare team. Lack of support and insurance as well as financial issues were major problems faced by the caregivers. They accepted the providence of Allah and noted that Allah always helps them accomplish their caregiving responsibilities. The care performed by the caregivers of patients with heart failure exceeds their individual capabilities. Nurses, other healthcare providers, and health policy makers may use the findings of this study to develop more effective programs to address these challenges and to provide more effective support.Sociocultural factors and perspectives were the primary factors affecting the caregiving experiences of participants in this study. Improved understanding of these factors and perspectives will help healthcare

  9. Grandparent Caregiving and Psychological Well-Being Among Chinese American Older Adults-The Roles of Caregiving Burden and Pressure.

    Science.gov (United States)

    Xu, Ling; Tang, Fengyan; Li, Lydia W; Dong, Xin Qi

    2017-07-01

    Though ample research on grandparent caregiving and psychological well-being outcomes exist in Western literature, little attention has been focused on Chinese American grandparents. Based on role enhancement and role strain theories, this study examined grandparent caregiving and psychological well-being among Chinese American older adults and tested whether caregiving burden or pressure from adult children moderated such association. We used the data from the Population Study of ChINese Elderly in Chicago (PINE), a population-based survey of community-dwelling Chinese older adults in the Greater Chicago area. Grandparents with grandchildren younger than 16 years old were selected for present study (N = 2,775). Negative binominal regression and logistic regression models were used to test the relationships of grandparent caregiving time and psychological well-being measured by depressive symptoms and quality of life. Grandparents reported an average of 11.96 hours a week for caring for grandchildren. Caregiving time had a significantly negative association with depressive symptoms, but not with quality of life. The association between grandparent caregiving and depressive symptoms was moderated by the perception of caregiving burden. No moderating effect of caregiving pressure from adult children was found. More time spending on grandparent caregiving is generally beneficial to Chinese American grandparents' psychological well-being, thus supporting role enhancement theory. However, this association depends on whether this experience is a burden to the grandparents, therefore role strain theory is also supported. Policies and programs are discussed to address the grandparenting experience in the Chinese American older adults. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  10. Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme

    Directory of Open Access Journals (Sweden)

    Spreeuwenberg Peter MM

    2010-06-01

    Full Text Available Abstract Background This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO and the Knowledge Centre on Ageing (Vilans, instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia. Methods In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly and support needs on the other hand. Results Almost all informal caregivers (92.6% received some professional support. However, two thirds (67.4% indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law: spouses relatively often need emotional support and sons or daughters (in-law more often need information and coordination of dementia care. Conclusions Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with

  11. Children and Caregivers' Exposure to Adverse Childhood Experiences (ACES): Association with Children's and Caregivers' Psychological Outcomes in a Therapeutic Preschool Program.

    Science.gov (United States)

    Ziv, Yair; Sofri, Inbar; Capps Umphlet, Kristen L; Olarte, Stephanie; Venza, Jimmy

    2018-03-31

    Exposure to adverse childhood experiences (ACE) has been found to have a profound negative impact on multiple child outcomes, including academic achievement, social cognition patterns, and behavioral adjustment. However, these links have yet to be examined in preschool children that are already experiencing behavior or social-emotional problems. Thus, the present study examined the links between the caregiver's and the child's exposure to ACE and multiple child and caregiver's outcomes in a sample of 30 preschool children enrolled in a Therapeutic Nursery Program (TNP). Children are typically referred to this TNP due to significant delays in their social emotional development that often result in difficulty functioning in typical childcare, home, and community settings. Analyses revealed some contradictory patterns that may be specific to this clinical sample. Children with higher exposure to ACE showed more biased social information processing patterns and their caregivers reported lower child social skills than caregivers of children with less exposure, however their inhibitory control levels were higher (better control) and staff reported that these children exhibited better social skills as well as better approaches to learning than children with less exposure. No such contradictions were found in relation to the caregiver's exposure to ACE, as it was positively associated with a number of negative child and caregiver outcomes.

  12. Maintaining the potential of a psycho-educational program: efficacy of a booster session after an intervention offered family caregivers at disclosure of a relative's dementia diagnosis.

    Science.gov (United States)

    Ducharme, Francine; Lachance, Lise; Lévesque, Louise; Zarit, Steven Howard; Kergoat, Marie-Jeanne

    2015-01-01

    Booster sessions as a means of maintaining the benefits of psycho-educational programs have received little attention in caregiving research. Caregivers were offered a booster session following participation in a program entitled Learning to Become a Family Caregiver (LBFC) intended to facilitate transition to the caregiver role after diagnostic disclosure of dementia in a relative. The 90-minute booster session served to review program content and afforded the opportunity to discuss and practice learned skills. This study sought to test the efficacy of the booster session in maintaining or recovering program effects at six months post-program. Participants in the program were randomly assigned to a group that received the booster session (n = 31) or a group that did not (n = 29). A third control group was also formed, which continued to receive only the usual care provided in memory clinics. Eligible participants - French-speaking primary caregivers of a relative diagnosed with Alzheimer's in the past nine months - were recruited in memory clinics in Quebec (Canada). Participants were blindly assessed before randomization and six months after the booster session on outcomes associated with a healthy role transition. Prediction analyses revealed one significant positive effect of the booster session: emergence of preparedness to provide care. Moreover, with or without the booster session, the program continued to have a positive effect on psychological distress and contributed to the emergence of self-efficacy in dealing with caregiving situations. The booster session had no significant effect on knowledge of services, planning for future care needs, use of reframing as a coping strategy, perceived informal support, and family conflicts. The limited effect observed is discussed in terms of the booster session's content and intensity. Recommendations are made for designing future research on the effect of booster sessions, including the importance of including a

  13. Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review.

    Science.gov (United States)

    Oh, Juyeon; Kim, Jung A

    2017-12-01

    To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. Scoping review. We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. Thirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8). From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. The Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals

  14. Early counselling and support for patients with mild Alzheimer's disease and their caregivers: a qualitative study on outcome

    DEFF Research Database (Denmark)

    Sørensen, Lisbeth V; Waldorff, Frans B; Waldemar, Gunhild

    2008-01-01

    OBJECTIVES: The aim of this qualitative study was to identify and analyse the participants' experienced outcome of an intensive structured psychosocial intervention programme with tailored counselling, education and support groups for home-living patients with mild Alzheimer's disease...... with the challenges their partner's disease involved, and they were able to face everyday life and social relations with more serenity and competence. After the intervention, both patients and caregivers sought suitable support groups they could join as a permanent activity and caregivers sought permanent counselling...... revealed that patients found support groups relevant: they found it stimulating to be with peers, it supported their self-esteem, and it supported them in finding new ways of managing everyday life and social relations. During and after the intervention, caregivers were better able to cope...

  15. Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study.

    Science.gov (United States)

    Henriksson, Anette; Årestedt, Kristofer

    2013-07-01

    Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. This was a correlational study using a cross-sectional design. The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.

  16. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

    Science.gov (United States)

    Carney, Sile; Corr, Bernie; Mays, Iain; Pender, Niall; Hardiman, Orla

    2018-01-01

    Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions

  17. A Bright Side to the Work-Family Interface: Husbands' Support as a Resource in Double-and-Triple-Duty Caregiving Wives' Work Lives.

    Science.gov (United States)

    DePasquale, Nicole; Polenick, Courtney A; Davis, Kelly D; Berkman, Lisa F; Cabot, Thomas D

    2017-06-16

    This study examined how women who combine long-term care employment with unpaid, informal caregiving roles for children (double-duty-child caregivers), older adults (double-duty-elder caregivers), and both children and older adults (triple-duty caregivers) differed from their workplace-only caregiving counterparts on workplace factors related to job retention (i.e., job satisfaction and turnover intentions) and performance (i.e., perceived obligation to work while sick and emotional exhaustion). The moderating effects of perceived spouse support were also examined. Regression analyses were conducted on survey data from 546 married, heterosexual women employed in U.S.-based nursing homes. Compared to workplace-only caregivers, double-duty-elder and triple-duty caregivers reported more emotional exhaustion. Double-duty-child caregivers reported lower turnover intentions and both double-and-triple-duty caregivers felt less obligated to work while sick when perceiving greater support from husbands. Results indicate that double-and-triple-duty caregiving women's job retention and obligation to work while sick may depend on perceived spouse support, highlighting the important role husbands play in their wives' professional lives. Findings also lend support to the emerging literature on marriage-to-work positive spillover, and suggest that long-term care organizations should target marital relationships in family-friendly initiatives to retain and engage double-and-triple-duty caregiving employees. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  18. Children with medical complexity: a scoping review of interventions to support caregiver stress.

    Science.gov (United States)

    Edelstein, H; Schippke, J; Sheffe, S; Kingsnorth, S

    2017-05-01

    Caring for children with chronic and complex medical needs places extraordinary stress on parents and other family members. A scoping review was undertaken to identify and describe the full range of current interventions for reducing caregiver stress. Applying a broad definition of caregiver stress, a systematic search of three scientific databases (CINAHL, Embase and Ovid Medline), a general internet search and hand searching of key peer-reviewed articles were conducted. Inclusion criteria were as follows: (i) published in English between 2004-2016; (ii) focused on familial caregivers, defined as parents, siblings or extended family; (iii) targeted children/youth with medical complexity between the ages of 1-24 years; and (iv) described an intervention and impact on caregiver stress. Data on type of intervention, study design and methods, measures and overall findings were extracted. Forty-nine studies were included from a list of 22 339 unique titles. Six domains of interventions were found: care coordination models (n = 23); respite care (n = 8); telemedicine (n = 5); peer and emotional support (n = 6); insurance and employment benefits (n = 4); and health and related supports (n = 3). Across studies, there was a wide variety of designs, outcomes and measures used. Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non-conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple

  19. Strengthening Incarcerated Families: Evaluating a Pilot Program for Children of Incarcerated Parents and Their Caregivers.

    Science.gov (United States)

    Miller, Alison L; Perryman, Jamie; Markovitz, Lara; Franzen, Susan; Cochran, Shirley; Brown, Shavonnea

    2013-10-01

    Parental incarceration can be devastating for families. Children may experience difficulties, and the stress on caregivers who take on unexpected childrearing is high. We implemented and evaluated a family-level intervention with caregivers and children experiencing parental (typically maternal) incarceration, in a community setting. We partnered with a community-based organization serving families with an incarcerated parent to conduct a pilot trial of the Strengthening Families Program (SFP). Process evaluation indicated high implementation fidelity, satisfaction, engagement, and attendance. Outcome evaluation results indicated positive changes in family-level functioning, caregivers' positive parenting, and caregiver depression symptoms from pre- to post-intervention, with some changes retained at follow-up 4 months later. Implications for preventive interventions with children of incarcerated parents, and their caregivers, are discussed.

  20. Caregiver and adolescent mental health in Ethiopian Kunama refugees participating in an emergency education program.

    Science.gov (United States)

    Betancourt, Theresa S; Yudron, Monica; Wheaton, Wendy; Smith-Fawzi, Mary C

    2012-10-01

    To examine the role of caregiver mental health and risk and protective factors in influencing levels of internalizing and externalizing emotional and behavioral symptoms over time among a sample of refugee adolescents. Prospective study of 153 Kunama refugee adolescents receiving an emergency education intervention while living in a camp in Ethiopia. Surveys were collected in 2001 (T1) and 2002 (T2). Adolescent and caregiver mental health were assessed using a Kunamenga adaptation of the Youth Self Report; caregiver mental health was assessed using the Hopkins Symptom Checklist-25. Attitudes toward education, satisfaction with education programming, socioeconomic status, and perceptions of access to services were also explored as variables potentially influencing adolescent mental health at follow-up. Caregiver distress was significantly associated with youth externalizing behavior symptoms (β = 8.34, p effect on externalizing behaviors (β = -7.54, p effect on internalizing symptoms. In terms of modifying effects, among youth with distressed caregivers, those who were satisfied with the International Rescue Committee education intervention had a lower internalizing score (β = -6.34, p refugee displacement. Results suggest that programs targeting mental health in refugee children should consider children within the larger family system, including caregiver influence on child and adolescent mental health adjustment over time. Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  1. Effects of structured group psychosocial support sessions on psychosocial wellbeing of children and their caregivers: a descriptive study.

    Science.gov (United States)

    Humeid, Jasem

    2018-02-21

    Children aged 7-12 years and their caregivers participated in a series of group psychosocial support sessions, using standard manuals specifically developed for facilitating such sessions such as Children Affected by Armed Conflict and Joint Sessions. The sessions used various activities, including drawing, storytelling, folk games, and other activities, to provide participants with opportunities to express their feelings, learn and practice new coping skills, and interact with others. The aim of this study was to measure the effects of structured psychosocial support sessions on the psychosocial wellbeing of children and their caregivers in the Gaza Strip. This descriptive study involved children and female caregivers selected from six locations using a stratified sampling technique. External numerators collected data before and after the group sessions. Two interview questionnaires with questions about psychological and social status were used, one for children and one for caregivers. The caregivers' questionnaire also assessed their psychosocial knowledge. Adult participants and caregivers of participating children provided verbal consent. Data were analysed with SPSS, and a p value less than 0·05 indicated significance. 155 children (77 [50%] boys and 78 [50%] girls) and 155 female caregivers were enrolled from a population of 1720 children (50% boys and 50% girls) and 1720 female caregivers. The sessions improved psychosocial wellbeing in participants, with the average psychosocial wellbeing score increasing from 58% to 87% in children and from 69% to 84% in caregivers. Caregivers' knowledge increased from 70% to 82%. Improvement was found in the various aspects of psychosocial wellbeing. No differences were found with respect to location, sex, and age. Structured group sessions improved psychosocial wellbeing in children and caregivers and improved caregivers' knowledge. Given the design of this study, it is difficult to fully attribute these results to the

  2. Worry about not having a caregiver and depressive symptoms among widowed older adults in China: the role of family support.

    Science.gov (United States)

    Xu, Ling; Li, Yawen; Min, Joohong; Chi, Iris

    2017-08-01

    Using the stress-coping framework, this study examined whether worry about not having a caregiver in old age was associated with depressive symptoms among widowed Chinese older adults, including the moderating effects of self-perceived family support. Using a sample of 5331 widowed adults aged 60 years old or older from the 2006 National Sample Survey of the Aged Population in Urban/Rural China, we regressed measures of depressive symptoms on worry about not having a caregiver. We also tested moderation effects of family support. Individuals who were worried about not having a caregiver reported significantly higher levels of depressive symptoms. Feeling that their children are filial, having instrumental support from children, and having only daughters moderated the effects of worry about not having a caregiver on depressive symptoms. Our findings indicate the detrimental effects of worry about not having a caregiver on the psychological well-being of widowed older adults. This study also highlights some forms of family support that may help reduce such negative effects of widowhood.

  3. Effects of the teach-model-coach-review instructional approach on caregiver use of language support strategies and children's expressive language skills.

    Science.gov (United States)

    Roberts, Megan Y; Kaiser, Ann P; Wolfe, Cathy E; Bryant, Julie D; Spidalieri, Alexandria M

    2014-10-01

    In this study, the authors examined the effects of the Teach-Model-Coach-Review instructional approach on caregivers' use of four enhanced milieu teaching (EMT) language support strategies and on their children's use of expressive language. Four caregiver-child dyads participated in a single-subject, multiple-baseline study. Children were between 24 and 42 months of age and had language impairment. Interventionists used the Teach-Model-Coach-Review instructional approach to teach caregivers to use matched turns, expansions, time delays, and milieu teaching prompts during 24 individualized clinic sessions. Caregiver use of each EMT language support strategy and child use of communication targets were the dependent variables. The caregivers demonstrated increases in their use of each EMT language support strategy after instruction. Generalization and maintenance of strategy use to the home was limited, indicating that teaching across routines is necessary to achieve maximal outcomes. All children demonstrated gains in their use of communication targets and in their performance on norm-referenced measures of language. The results indicate that the Teach-Model-Coach-Review instructional approach resulted in increased use of EMT language support strategies by caregivers. Caregiver use of these strategies was associated with positive changes in child language skills.

  4. Caregiving burden and its determinants in Polish caregivers of stroke survivors.

    Science.gov (United States)

    Jaracz, Krystyna; Grabowska-Fudala, Barbara; Górna, Krystyna; Kozubski, Wojciech

    2014-10-27

    Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization. Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver's sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden. Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p emotional state and the level of patients' dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.

  5. Resilience and social support as protective factors against abuse of patients with dementia: A study on family caregivers.

    Science.gov (United States)

    Serra, Lídia; Contador, Israel; Fernández-Calvo, Bernardino; Ruisoto, Pablo; Jenaro, Cristina; Flores, Noelia; Ramos, Francisco; Rivera-Navarro, Jesús

    2018-05-24

    Scientific literature has identified different vulnerability factors associated to abuse in people with dementia (PWD), but little is known about the psychosocial protective variables against abuse. The main objective of this study is to investigate a set of caregiver and patient factors linked to abuse-related behavior of PWD. A total of 326 primary and family caregivers, residents of the Castilla and León community (Spain), were evaluated. All participants filled out a standardized protocol, which assessed the sociodemographic characteristics, patient and care-related variables, as well as the perceived burden, resilience, and social support. Abuse-related behavior was evaluated using the Caregiver Abuse Screen. Results show that the severity of cognitive impairment and behavior disorders of PWD, a greater number of caregiving hours, a worse previous relationship with the caregiver, and perceived burden are positively related with abuse. However, resilience and social support showed a negative relationship with Caregiver Abuse Screen scores, suggesting a protective effect on abuse, even after controlling the effect of a number of covariates. Indeed, resilience was the only variable that remained significant after including the effect of burden. This paper states the role of burden in abuse of PWD, while resilience and social support are abuse protective factors. These variables should be considered in future guidelines for the prevention of abuse against PWD. Copyright © 2018 John Wiley & Sons, Ltd.

  6. Aboriginal Children and Their Caregivers Living with Low Income: Outcomes from a Two-Generation Preschool Program.

    Science.gov (United States)

    Benzies, Karen; Tough, Suzanne; Edwards, Nancy; Mychasiuk, Richelle; Donnelly, Carlene

    2011-06-01

    The development of preschool children of Aboriginal heritage is jeopardized by the inter-generational transmission of risk that has created, and continues to create, social disadvantage. Early intervention programs are intended to mitigate the impact of social disadvantage. Yet, evidence of the effectiveness of these programs for children of Aboriginal heritage is limited. The purpose of this study was to examine the effects of a two-generation, multi-cultural preschool program on 45 children of Aboriginal heritage and their caregivers. We used a single-group, pretest (program intake)/posttest (program exit) design with follow-up when the children were 7 years old. We used an observational measure of child receptive language (Peabody Picture Vocabulary Test-III) and caregiver-reported measures of child development (Nipissing District Developmental Screen), risk for child maltreatment (Adult-Adolescent Parenting Inventory; AAPI), parenting stress (Parenting Stress Index; PSI), self-esteem (Rosenberg Self-Esteem scale; RSE), and life skills (Community Life Skills scale; CLS). Using paired t-tests we found statistically significant increases in child receptive language scores between intake and exit, and repeated-measures ANOVA showed that these improvements were maintained up to age 7 years. For caregivers, Pearson's correlations demonstrated that risk for child maltreatment, parenting stress, self-esteem, and life skills were stable over time. Results of this study suggest that children of Aboriginal heritage can benefit from participation in a two-generation, multi-cultural preschool program. Their caregivers may have received greater benefit if issues of intergenerational transmission of the negative influences of residential schools were addressed as part of programming.

  7. Long-Term Effects of Bereavement and Caregiver Intervention on Dementia Caregiver Depressive Symptoms

    Science.gov (United States)

    Haley, William E.; Bergman, Elizabeth J.; Roth, David L.; McVie, Theresa; Gaugler, Joseph E.; Mittelman, Mary S.

    2008-01-01

    Purpose: The purpose of this study was to examine the joint effects of bereavement and caregiver intervention on caregiver depressive symptoms. Design and Methods: Alzheimer's caregivers from a randomized trial of an enhanced caregiver support intervention versus usual care who had experienced the death of their spouse (n = 254) were repeatedly…

  8. Developing a falls prevention program for community-dwelling stroke survivors in Singapore: client and caregiver perspectives.

    Science.gov (United States)

    Xu, Tianma; O'Loughlin, Kate; Clemson, Lindy; Lannin, Natasha A; Dean, Catherine; Koh, Gerald

    2017-12-25

    Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall. Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software. All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process. Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke

  9. Effectiveness of a caregiver education program on providing oral care to individuals with intellectual and developmental disabilities.

    Science.gov (United States)

    Fickert, Nancy A; Ross, Diana

    2012-06-01

    Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to determine the effectiveness of a caregiver educational program. This study used a quasi-experimental one-group pretest/posttest design with repeated measures to describe the outcomes of an educational program. Program participants demonstrated oral hygiene skills on each other while being scored by a trained observer, after which they completed an oral hygiene compliance survey. After three months, a follow-up included the same posttest, demonstration of oral hygiene skills, and repeat of the compliance survey. Paired-sample t-tests of oral hygiene knowledge showed a statistically significant improvement from pretest to posttest and from pretest to three-month posttest. Oral hygiene skills and compliance improved. Results demonstrate evidence that caregiver education improves knowledge, skill, and compliance in oral hygiene. Further studies are required to demonstrate the value of providing oral hygiene education and training for caregivers of individuals with intellectual and developmental disabilities.

  10. Enhanced Psychosocial Support for Caregiver Burden for Patients With Chronic Kidney Failure Choosing Not to Be Treated by Dialysis or Transplantation: A Pilot Randomized Controlled Trial.

    Science.gov (United States)

    Chan, Kwok Ying; Yip, Terence; Yap, Desmond Y H; Sham, Mau Kwong; Wong, Yim Chi; Lau, Vikki Wai Kee; Li, Cho Wing; Cheng, Benjamin Hon Wai; Lo, Wai Kei; Chan, Tak Mao

    2016-04-01

    Family caregivers of patients with chronic kidney failure have increased burden, as reflected by their high frequency of physical and mental disturbances. The impact of enhanced psychosocial support to caregivers of patients with chronic kidney failure remains unclear. Open-label randomized controlled trial. All new patients referred to the renal palliative clinic were screened. Caregivers of patients who met the following criteria were recruited: (1) chronic kidney failure as defined by creatinine clearance renal care (control). Enhanced psychosocial support included counseling and psychosocial interventions by an on-site palliative care nurse and designated social worker. Each caregiver was followed up at 2- to 4-week intervals for up to 6 months. Zarit Burden Inventory (ZBI) and Hospital Anxiety and Depression Scale (HADS) in caregivers and McGill Quality of Life scores in patients of both groups were compared. 29 pairs of family caregivers/patients with chronic kidney failure were randomly assigned (intervention, n=14; control, n=15). Mean ages of patients and caregivers were 81.6 ± 5.1 and 59.8 ± 14.2 (SD) years, respectively. The intervention group showed significantly lower ZBI scores than the control group at 1 and 3 months (22.0 ± 5.3 vs 31.6 ± 9.5 and 21.3 ± 6.6 vs 33.4 ± 7.2; P=0.006 and P=0.009, respectively). HADS anxiety scores of caregivers who received the intervention were significantly lower than those of controls at 1 and 3 months (7.1 ± 3.2 vs 10.1 ± 2.2 and 6.5 ± 4.5 vs 11.0 ± 3.1; P=0.01 and P=0.03, respectively). Insignificant reductions in ZBI and HADS scores were found at 6 months. 19 patients died (intervention, n=10; control, n=9) during the study period. The study is limited by a relatively small sample size and short duration. Enhanced psychosocial support program in patients with chronic kidney failure and caregivers resulted in an early significant reduction in caregiver burden and anxiety. Copyright © 2016 National Kidney

  11. Influence of Emotional Support Exchange in Marriage on Caregiving Wives' Burden and Marital Satisfaction.

    Science.gov (United States)

    Wright, Debra L.; Aquilino, William S.

    1998-01-01

    Interrelationships among elderly couples' reciprocity of emotional support, wives' experience of caregiving for husbands with disabilities, and wives' marital happiness are explored. Level of functioning and type of disability, and levels of exchange of emotional support were measured. Regression models are presented and relationships among…

  12. Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends.

    Science.gov (United States)

    Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert; Looman, Wendy J; McCarthy, Catherine A; Maslow, Katie; Moye, Jennifer A; Randazzo, Ronda; Garcia-Maldonado, Maurilio; Elbein, Richard; Odenheimer, Germaine; Kunik, Mark E

    2013-08-01

    The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

  13. Exploration the Supportive Needs and Coping Behaviors of Daughter and Daughter in-Law Caregivers of Stroke Survivors, Shiraz-Iran: A Qualitative Content Analysis.

    Science.gov (United States)

    Gholamzadeh, Sakineh; Tengku Aizan, Hamid; Sharif, Farkhondeh; Hamidon, Basri; Rahimah, Ibrahim

    2015-07-01

    The period of hospital stay and the first month after discharge have been found to be the most problematic stages for family caregivers of stroke survivors. It is just at home that patients and caregivers actually understand the whole consequences of the stroke. The adult offspring often have more different needs and concerns than spousal caregivers. However, relatively little attention has been paid to the needs of this particular group of caregivers. Therefore, this qualitative content analysis study aimed to explore the supportive needs and coping behaviors of daughter and daughter in-law caregivers (DILs) of stroke survivors one month after the patient's discharge from the hospital in Shiraz, Southern of Iran. This is a qualitative content analysis study using semi-structured and in-depth interviews with a purposive sampling of seventeen daughter and daughter in-law caregivers. The data revealed seven major themes including information and training, financial support, home health care assistance need, self-care support need, adjusting with the cultural obligation in providing care for a parent in-law, and need for improving quality of hospital care. Also, data from the interview showed that daughter and daughter in-law caregivers mostly used emotional-oriented coping strategies, specially religiosity, to cope with their needs and problems in their care-giving role. The results of this qualitative study revealed that family caregivers have several unmet needs in their care-giving role. By providing individualized information and support, we can prepare these family caregivers to better cope with the home care needs of stroke survivors and regain control over aspects of life.

  14. Comparison of caregiver strain in Parkinson's disease between Yamagata, Japan, and Maryland, The United States.

    Science.gov (United States)

    Tanji, Haruko; Koyama, Shingo; Wada, Manabu; Kawanami, Toru; Kurita, Keiji; Tamiya, Gen; Saito, Naohiro; Suzuki, Kyoko; Kato, Takeo; Anderson, Karen E; Gruber-Baldini, Ann L; Fishman, Paul S; Reich, Stephen G; Weiner, William J; Shulman, Lisa M

    2013-06-01

    Japan and the United States (US) have different cultures of caregiving including differences in family structure and social programs that may influence caregiver strain. Differences in caregiver strain between regions in Japan and in the US have not been investigated in patient-spouse dyads in PD. To compare caregiver strain in spouses of PD patients between Yamagata, Japan and Maryland, US. Correlations between caregiver strain and patient/spousal variables are also examined. In Yamagata and Maryland, spouses of patients with PD completed questionnaires assessing caregiver strain. Patients and spouses completed scales assessing mental health, and medical co-morbidity. PD severity and disability were assessed with the Unified Parkinson's Disease Rating Scale and the Schwab and England Activities of Daily Living Scale. Results in the two regions were compared with Chi-square and Student's t-tests. Relationships between caregiver strain and patient/spousal variables were analyzed with univariate correlations and multivariate regression. 178 Spouse-patient pairs were assessed. The level of caregiver strain in PD did not differ between Yamagata, Japan and Maryland, US despite differences in demographics and social support programs in the two regions. Yamagata spouses reported physical, time and financial constraints, while Maryland spouses reported more emotional distress. In both regions, spousal depression was a significant contributor to caregiver strain. Different approaches to reduce caregiver strain will likely be necessary in Yamagata and Maryland since the contributing factors to caregiver strain are influenced by differences in culture and social supports in each country. Copyright © 2013 Elsevier Ltd. All rights reserved.

  15. Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China.

    Science.gov (United States)

    Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying

    2016-03-01

    We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.

  16. Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients: A Systematic Review.

    Science.gov (United States)

    Ge, Lixia; Mordiffi, Siti Zubaidah

    Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.

  17. Social support as a mediator variable of the relationship between depression and life satisfaction in a sample of Saudi caregivers of patients with Alzheimer's disease.

    Science.gov (United States)

    Khusaifan, Shatha Jamil; El Keshky, Mogeda El Sayed

    2017-02-01

    Caring for someone with Alzheimer's disease (AD) is very challenging. Social support may play a crucial role in helping caregivers to adapt better to their caregiving role. The aim of this study is to explore the role of social support as a moderator variable of the relationship between depression and life satisfaction in caregivers for patients with AD in Saudi Arabia. In this cross-sectional study, 122 caregivers for patients with AD completed questionnaires assessing informal social support, depressive symptoms, and general life satisfaction. The demographic characteristics showed that 79% (n = 96) of caregivers were females and between the ages of 20 and 50. Higher levels of social support positively correlated with reported higher levels of life satisfaction (r = 0.483, p Depression was negatively correlated with social support (r = -0.418, p Social support was found to be a partial mediator variable, mediating approximately 23.05% of the total effect of depression on life satisfaction (Sobel = -3.065, p = 0.002). Informal social support can act as a mediator variable in the relationship of depression and life satisfaction in caregivers of AD patients. Improving the informal social support networks may help in coping with caregiving burden and better quality of life.

  18. Family Caregivers of Adults with Intellectual and Developmental Disabilities: Outcomes Associated with U.S. Services and Supports

    Science.gov (United States)

    Williamson, Heather J.; Perkins, Elizabeth A.

    2014-01-01

    Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…

  19. Powerful Tools for Caregivers, a Group Psychoeducational Skill-Building Intervention for Family Caregivers

    Directory of Open Access Journals (Sweden)

    Daniel M. Rosney

    2017-09-01

    Full Text Available Introduction: Care providers consistently report negative consequences to their mental health as a direct result of their caregiving responsibilities. Specifically, they describe higher levels of distress, mental health problems, and depressive symptoms compared to their non-caregiving matched controls. Powerful Tools for Caregivers (PTC is a national program that aims to empower caregivers to better care for themselves and enhance their self-efficacy. The purpose of the present study was to determine and quantify the effectiveness of the PTC program through pre/post data analysis. Methods: PTC intervention was evaluated at two questionnaire time points: pre-PTC and post-PTC between June 30, 2004 and Oct 16, 2013. Paired sample t-tests (n=409 were conducted using SPSS Statistics Version 22 (IBM Corp., Armonk, NY. Results: PTC increased caregivers who conducted self-care behaviors, who demonstrated self-efficacy, management of depressing emotions and those who used community resources. Conclusion: PTC results in caregivers reporting that they are taking better care of themselves, reacting to their emotions in a healthier manner, gaining more confidence in their caregiving abilities and coping skills, and becoming more knowledgeable about receiving assistance from their community resources.

  20. [Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

    Science.gov (United States)

    Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

    2018-06-11

    There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

  1. Assistance received by employed caregivers and their care recipients: who helps care recipients when caregivers work full time?

    Science.gov (United States)

    Scharlach, Andrew E; Gustavson, Kristen; Dal Santo, Teresa S

    2007-12-01

    This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

  2. Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

    Science.gov (United States)

    Maiden, Robert J.; And Others

    Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…

  3. An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts

    Directory of Open Access Journals (Sweden)

    Van Houtven Courtney

    2011-11-01

    Full Text Available Abstract Background Caregiver interventions may help improve the quality of informal care. Yet the lack of a systematic framework specifying the targets and outcomes of caregiver interventions hampers our ability to understand what has been studied, to evaluate existing programs, and to inform the design of future programs. Our goal was to develop an organizing framework detailing the components of the caregiving activities and the caregiver and care recipient outcomes that should be affected by an intervention. In so doing, we characterize what has been measured in the published literature to date and what should be measured in future studies to enable comparisons across interventions and across time. Methods Our data set comprises 121 reports of caregiver interventions conducted in the United States and published between 2000 and 2009. We extracted information on variables that have been examined as primary and secondary outcomes. These variables were grouped into categories, which then informed the organizing framework. We calculated the frequency with which the interventions examined each framework component to identify areas about which we have the most knowledge and under-studied areas that deserve attention in future research. Results The framework stipulates that caregiver interventions seek to change caregiving activities, which in turn affect caregiver and care recipient outcomes. The most frequently assessed variables have been caregiver psychological outcomes (especially depression and burden and care recipient physical and health care use outcomes. Conclusions Based on the organizing framework, we make three key recommendations to guide interventions and inform research and policy. First, all intervention studies should assess quality and/or quantity of caregiving activities to help understand to what extent and how well the intervention worked. Second, intervention studies should assess a broad range of caregiver and care recipient

  4. Recruitment of Older Adult Patient-Caregiver Dyads for an Online Caregiver Resource Program: Lessons Learned.

    Science.gov (United States)

    Nahm, Eun-Shim; Orwig, Denise; Resnick, Barbara; Magaziner, Jay; Bellantoni, Michele; Sterling, Robert

    2012-01-12

    Hip fracture is a significant health problem for older adults and generally requires surgery followed by intensive rehabilitation. Informal caregivers (CGs) can provide vital assistance to older adults recovering from hip fracture. Caregiving is a dyadic process that affects both CGs and care recipients (CRs). In a feasibility study, we assessed the effects of using a theory-based online hip fracture resource program for CGs on both CGs and CRs. In this article, we discuss our recruitment process and the lessons learned. Participants were recruited from six acute hospitals, and CGs used the online resource program for 8 weeks. A total of 256 hip fracture patients were screened, and 164 CRs were ineligible. CG screening was initiated when CRs were determined to be eligible. Among 41 eligible dyads, 36 dyads were recruited. Several challenges to the recruitment of these dyads for online studies were identified, including a low number of eligible dyads in certain hospitals and difficulty recruiting both the CR and the CG during the short hospital stay. Field nurses often had to make multiple trips to the hospital to meet with both the CR and the CG. Thus, when a subject unit is a dyad recruited from acute settings, the resources required for the recruitment may be more than doubled. These challenges could be successfully alleviated with careful planning, competent field staff members, collaboration with hospital staff members, and efficient field operations.

  5. Family Caregiver Identity: A Literature Review

    Science.gov (United States)

    Eifert, Elise K.; Adams, Rebecca; Dudley, William; Perko, Michael

    2015-01-01

    Background: Despite the multitude of available resources, family caregivers of those with chronic disease continually underutilize support services to cope with the demands of caregiving. Several studies have linked self-identification as a caregiver to the increased likelihood of support service use. Purpose: The present study reviewed the…

  6. [Effects of Home Care Services Use by Older Adults on Family Caregiver Distress].

    Science.gov (United States)

    Kim, Jiyeon; Kim, Hongsoo

    2016-12-01

    The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.

  7. Symptoms of depression in non-routine caregivers: the role of caregiver strain and burden.

    Science.gov (United States)

    Phillips, Anna C; Gallagher, Stephen; Hunt, Kate; Der, Geoff; Carroll, Douglas

    2009-11-01

    The origins and persistence of psychological morbidity in caregivers are not fully understood. The present analysis examined the relationship between the strain and burden of caregiving and depression and anxiety in a large community sample. Social support and sleep quality were investigated as potential mediators. Cross-sectional and prospective observational study. Individuals caring for someone other than their own child (N=393) were identified from a population of 2,079. Caregiving strain and burden, social support, and sleep quality were assessed. Participants completed the hospital anxiety and depression scale at the same time and 5 years later. Caregiving strain and burden were associated with depression and anxiety symptoms cross-sectionally, and with a worsening of symptoms 5 years later. Sleep quality appeared to mediate the cross-sectional relationships. The demands of caregiving and associated sleep disruption contribute to symptoms of depression and anxiety in caregivers.

  8. Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

    Science.gov (United States)

    Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

    2015-08-01

    Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

  9. Strengthening Incarcerated Families: Evaluating a Pilot Program for Children of Incarcerated Parents and Their Caregivers

    OpenAIRE

    Miller, Alison L.; Perryman, Jamie; Markovitz, Lara; Franzen, Susan; Cochran, Shirley; Brown, Shavonnea

    2013-01-01

    Parental incarceration can be devastating for families. Children may experience difficulties, and the stress on caregivers who take on unexpected childrearing is high. We implemented and evaluated a family-level intervention with caregivers and children experiencing parental (typically maternal) incarceration, in a community setting. We partnered with a community-based organization serving families with an incarcerated parent to conduct a pilot trial of the Strengthening Families Program (SFP...

  10. A Yoga and Compassion Meditation Program Reduces Stress in Familial Caregivers of Alzheimer's Disease Patients

    Directory of Open Access Journals (Sweden)

    M. A. D. Danucalov

    2013-01-01

    Full Text Available Familial caregivers of patients with Alzheimer's disease exhibit reduced quality of life and increased stress levels. The aim of this study was to investigate the effects of an 8-week yoga and compassion meditation program on the perceived stress, anxiety, depression, and salivary cortisol levels in familial caregivers. A total of 46 volunteers were randomly assigned to participate in a stress-reduction program for a 2-month period (yoga and compassion meditation program—YCMP group (n=25 or an untreated group for the same period of time (control group (n=21. The levels of stress, anxiety, depression, and morning salivary cortisol of the participants were measured before and after intervention. The groups were initially homogeneous; however, after intervention, the groups diverged significantly. The YCMP group exhibited a reduction of the stress (P<0.05, anxiety (P<0.000001, and depression (P<0.00001 levels, as well as a reduction in the concentration of salivary cortisol (P<0.05. Our study suggests that an 8-week yoga and compassion meditation program may offer an effective intervention for reducing perceived stress, anxiety, depression, and salivary cortisol in familial caregivers.

  11. A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones.

    Science.gov (United States)

    Garvelink, Mirjam M; Ngangue, Patrice A G; Adekpedjou, Rheda; Diouf, Ndeye T; Goh, Larissa; Blair, Louisa; Légaré, France

    2016-04-01

    We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors. Project HOPE—The People-to-People Health Foundation, Inc.

  12. Social relationships among family caregivers: a cross-cultural comparison between Mexican Americans and non-Hispanic White caregivers.

    Science.gov (United States)

    Phillips, Linda R; Crist, Janice

    2008-10-01

    Sometimes, clinicians assume caregivers in cultural groups believed to have large social networks and strong social support need little intervention from health professionals. This longitudinal study tests five hypotheses about the social relationships of Mexican American compared to non-Hispanic White caregivers and whether negative changes in social support affect perceived health. The sample includes 66 Mexican American and 92 non-Hispanic White caregivers. Findings show that social networks and social support are similar at baseline and similarly stable for 1 year. Negative changes in social support are correlated with poorer health perceptions. Findings underscore the importance of designing interventions that are culturally competent based on what the caregiver is experiencing rather than cultural stereotypes.

  13. Emergence of Yalom's therapeutic factors in a peer-led, asynchronous, online support group for family caregivers.

    Science.gov (United States)

    Diefenbeck, Cynthia A; Klemm, Paula R; Hayes, Evelyn R

    2014-01-01

    Support groups fill a critical void in the health care system, harnessing the power of shared experiences to provide support to group members. Likewise, family caregivers fill a void in the health care system, providing billions in unpaid care to the chronically ill. Caregiver support groups offer an opportunity for alleviating the psychological burden of caregiving. The power of any group, including a support group, to foster psychological well-being lies in its ability to cultivate Yalom's therapeutic factors. Gaps in the literature remain regarding the ability of non-prototypical groups to promote therapeutic mechanisms of change. The purpose of this study was to determine if and when Yalom's therapeutic group factors emerged in a peer-led support group delivered in an asynchronous, online format. Qualitative content analysis utilizing deductive category application was employed. Participants' responses were coded and frequency counts were conducted. Results revealed that 9 of 11 therapeutic factors emerged over the course of the group, with Group Cohesiveness, Catharsis, Imparting of Information, and Universality occurring most often. Several factors, including Interpersonal Learning, Corrective Recapitulation of the Primary Family Group, Imitative Behavior, and Development of Socializing Techniques were absent or virtually absent, likely due to the peer-led format of the group. Progression of therapeutic factors over the course of the group is presented. Findings demonstrate the presence of a variety of Yalom's therapeutic factors in an asynchronous, peer-led online support group.

  14. When the private sphere goes public: exploring the issues facing family caregiver organizations in the development of long-term care policies.

    Science.gov (United States)

    Rozario, Philip A; Palley, Elizabeth

    2008-01-01

    Though family caregiving forms the backbone of the long-term care system in the United States, long-term care policies have traditionally focused on paid services that frail older people and people with disabilities utilize for their day-to-day functioning. Part of the exclusion of family caregiving from the long-term care discourse stems from the traditional separation of the private sphere, where family caregiving occurs, from the public sphere of policy making. However, the passage of the Family and Medical Leave Act (FMLA), the National Family Caregiver Support Program (NFCSP) and Medicaid waiver legislation may reflect recent changes in the government's position on their role in addressing issues related to the "private spheres." In this article, we explore the nature of family caregiving in the United States, the divide between the public and private spheres and provide an overview of family caregiving-related policies and programs in the U.S. In our review, we examine the provisions in the FMLA, NFCSP, and Medicaid waiver legislation that support family caregiving efforts. We also examine the roles of family caregiver organizations in making family caregiving an important element of long-term care policy and influencing policy-making.

  15. The Effect of Cancer Patients' and Their Family Caregivers' Physical and Emotional Symptoms on Caregiver Burden.

    Science.gov (United States)

    Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia

    Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.

  16. Adjustment to Acute Leukemia: The Impact of Social Support and Marital Satisfaction on Distress and Quality of Life Among Newly Diagnosed Patients and Their Caregivers.

    Science.gov (United States)

    Pailler, Megan E; Johnson, Teresa M; Kuszczak, Sarah; Attwood, Kristopher M; Zevon, Michael A; Griffiths, Elizabeth; Thompson, James; Wang, Eunice S; Wetzler, Meir

    2016-09-01

    Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.

  17. Physical disability contributes to caregiver stress in dementia caregivers.

    Science.gov (United States)

    Bruce, David G; Paley, Glenys A; Nichols, Pamela; Roberts, David; Underwood, Peter J; Schaper, Frank

    2005-03-01

    Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

  18. Protocol group education for family caregivers of elderly dependents

    Directory of Open Access Journals (Sweden)

    Cristina Anguita Carpio

    2012-03-01

    Full Text Available Family is the main care source for the dependent person. The act of looking after somebody, involves the development of multiple tasks, apart from spending a lot of time. This implies a series of requirements that would be able to damage the family caregivers’ quality of life, and definitively, their health. Objetive: training for family caregivers to provide quality care, in order to succeed in this project, we establish three specific aims: improving the information and training, increase self-care abilities and focus on resources and support services for informal caregivers. Methods: We are going to implement an educative intervention in a group of 12 informal caregivers of people over 65 years, dependent on chronic diseases and develop home care. The program will be composed of 10 sessions, each one of two-hour-long. The first session will consist of an introduction and the last session will be reserved to solve doubts and to deal with the assessment of the program. Throughout the rest of sessions, contents about training, self, resources and assistance services for caregivers will be proposed. In order to evaluate the efficiency of the program, a multiple choice questionnaire will be taken both al the beginning and at the end of the different sessions. In order to evaluate the human resources and the applied methodology, another questionnaire will be passed.

  19. The psychological well-being of disability caregivers: examining the roles of family strain, family-to-work conflict, and perceived supervisor support.

    Science.gov (United States)

    Li, Andrew; Shaffer, Jonathan; Bagger, Jessica

    2015-01-01

    We draw on the cross-domain model of work-family conflict and conservation of resources theory to examine the relationship between disability caregiving demands and the psychological well-being of employed caregivers. Using a sample of employed disability caregivers from a national survey, we found that the relationship between caregiving demands and family-to-work conflict was stronger when employees experienced high levels of strain from family. Additionally, we found high levels of family to-work conflict were subsequently associated with decreases in life satisfaction and increases in depression, but only when perceived supervisor support was low. Overall, our findings suggest an indirect relationship between caregiving demands and psychological well-being that is mediated by family-to-work conflict and is conditional on family strain and perceived supervisor support. The theoretical and practical implications of these findings are discussed. PsycINFO Database Record (c) 2014 APA, all rights reserved.

  20. Predictors of caregiver burden in Iranian family caregivers of cancer patients.

    Science.gov (United States)

    Mirsoleymani, Seyed Reza; Rohani, Camelia; Matbouei, Mahsa; Nasiri, Malihe; Vasli, Parvaneh

    2017-01-01

    Caregiver burden threatens the psychological, emotional, functional and even physical health of caregivers. The aims of this study were to determine caregiver burden and family distress and the relationship between them, also to explore predictors of caregiver burden in a sample of Iranian family caregivers of cancer patients. This is a cross-sectional study with correlational design. A total of 104 family caregivers of cancer patients were asked to respond to the Caregiver Burden Inventory (CBI) and the Family Distress Index (FDI) together with a sociodemographic questionnaire. For evaluating the relationship between CBI and FDI scores, the Pearson's product-moment correlation was used. In addition, multiple linear regression analysis was applied to explore the predictive factors of caregiver burden. A high burden was experienced by almost half of the caregivers (48.1%). The FDI mean score was 9.76 ± 5.40 ranged from 0 to 24. A strong positive correlation was found between the caregiver burden and family distress ( r = 0.76). Multiple linear regression results showed the predictive role of FDI score (β = 0.71, P = 0.001), patient's gender (β = -0.25, P = 0.001), and early cancer diagnosis (β =0.13, P = 0.027) in caregiver burden. They could explain 65% of variance in the level of burden in family caregivers. Family nurses should consider the caregivers burden and vulnerability of families with cancer patient, especially if the patient is a male or has a new diagnosis. They should also design special programs for the whole family as a system that family can adapt to the new situation.

  1. [Psychoneuroimmunological predictors for burden in older caregivers of patients with Alzheimer's disease].

    Science.gov (United States)

    Corazza, Danilla I; Pedroso, Renata V; Andreatto, Carla A A; Scarpari, Lais; Garuffi, Marcelo; Costa, José L R; Santos-Galduróz, Ruth F

    2014-01-01

    The responsibility of giving care to patients with Alzheimer's disease (AD) may result in health changes in the older caregiver. It is important to explore the factors which influence the presence of care burden and to create strategies to face this condition. In this context, the aims of present study were to investigate the relationships between psychoneuroimmunological parameters and determine the predictors to burden in older caregivers of patients with AD. A total of 30 AD older caregivers participating in the «Cognitive and Functional Kinesiotherapy Program in Elderly with Alzheimer's disease«(PRO-CDA)», de Rio Claro, SP-Brazil, were submitted to an assessment protocol to evaluate the psychoneuroimmunological parameters. A descriptive statistical analysis, Pearson correlation and multiple linear regressions were performed. The mean age of caregivers was 71.3 (±9.3), and predominantly are first-grade relatives. The caregiver burden was associated with depressive symptoms (r=0.60, P<.001), caregiver distress (r=0.68, P<.001), and neuropsychiatric disorders of AD patients (r=0.53, P<.001). The multiple regression analysis confirmed depressive symptoms and neuropsychiatric disturbances as predictors of caregiver burden. Caregiver burden is associated with, and influenced by parameters related to the caregiver psychological suffering and to characteristics inherent to AD. Thus, it is important to find strategies and implement non-pharmacological programs to provide support to older caregivers, and to assist in the treatment of patients with AD, in order to improve the integral health of this population. Copyright © 2013 SEGG. Published by Elsevier Espana. All rights reserved.

  2. An Overview Of Specialist Nurse Role In Patients With Stroke Caring And Their Care-Givers Support

    Directory of Open Access Journals (Sweden)

    Elham Navab

    2017-02-01

    Full Text Available Background: The practical difficulties for patients with stroke include lack of information about their condition, poor knowledge of the services and benefits available. Specialist Stroke nurses provide education and support services for people with Stroke  in many health care systems. A key goal is helping and empowering unable people to self-manage their stroke and supporting caregivers of these valnurable population, too. Objective: The objective of this review was to assess the role of specialist nurse in care for patients following a stroke and their caregivers support. Search methods: The databases CINAHL, PubMed, Science Direct and Synergy were searched from 1988 to 2017 using the keywords Stroke, Specialist Nurse, Care, Caregivers and support. Bibliographies of relevant papers were searched, and hand searching of relevant publications was undertaken to identify additional Studies. Selection criteria: All studies of the effects of a specialist nurse practitioner on short and long term stroke outcomes were included in the review. Data collection and analysis: Three investigators performed data extraction and quality scoring independently; any discrepancies were resolved by consensus. Findings:  Stroke, Specialist Nurse, Care, Caregivers concepts and labels are defined and measured in different and often contradictory ways by using 31 founded study. Conclusions: The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care and specialist nurse requires further exploration. The contrasting paradigms of health care professionals and people with stroke regarding models of disability were highlighted.  Stroke, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.

  3. A Disproportionate Burden of Care: Gender Differences in Mental Health, Health-Related Quality of Life, and Social Support in Mexican Multiple Sclerosis Caregivers

    Directory of Open Access Journals (Sweden)

    Paul B. Perrin

    2015-01-01

    Full Text Available Background. Multiple sclerosis (MS rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory, health-related quality of life (HRQOL; Short Form-36, and social support (Interpersonal Support Evaluation List-12 in 81 (66.7% women Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (p=0.006, HRQOL (p<0.001, and social support (p<0.001. This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, p=0.018 and for nearly three times as many months (66.31 versus 24.30, p=0.002. Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning.

  4. Caregiver-Provided Physical Therapy Home Programs for Children with Motor Delay: A Scoping Review.

    Science.gov (United States)

    Gorgon, Edward James R

    2018-06-01

    Caregiver-provided physical therapy home programs (PTHP) play an important role in enhancing motor outcomes in pediatric patient populations. This scoping review systematically mapped clinical trials of caregiver-provided PTHP that were aimed at enhancing motor outcomes in children who have or who are at risk for motor delay, with the purpose of (1) describing trial characteristics; (2) assessing methodologic quality; and (3) examining the reporting of caregiver-related components. Physiotherapy Evidence Database (PEDro), Cochrane CENTRAL, PubMed, Scopus, ScienceDirect, ProQuest Central, CINAHL, LILACS, and OTseeker were searched up to July 31, 2017. Two reviewers independently assessed study eligibility. Randomized or quasi-randomized controlled trials on PTHP administered by parents, other family members, friends, or informal caregivers to children who had or who were at risk for motor delay were included. Two reviewers independently appraised trial quality on the PEDro scale and extracted data. Twenty-four articles representing 17 individual trials were identified. Populations and interventions investigated were heterogeneous. Most of the trials had important research design limitations and methodological issues that could limit usefulness in ascertaining the effectiveness of caregiver-provided PTHP. Few (4 of 17) trials indicated involvement of caregivers in the PTHP planning, assessed how the caregivers learned from the training or instructions provided, or carried out both. Included studies were heterogeneous, and unpublished data were excluded. Although caregiver-provided PTHP are important in addressing motor outcomes in this population, there is a lack of evidence at the level of clinical trials to guide practice. More research is urgently needed to determine the effectiveness of care-giver-provided PTHP. Future studies should address the many important issues identified in this scoping review to improve the usefulness of the trial results.

  5. An Evaluation of Behavioral Skills Training for Teaching Caregivers How to Support Social Skill Development in Their Child with Autism Spectrum Disorder.

    Science.gov (United States)

    Hassan, Mahfuz; Simpson, Andrea; Danaher, Katey; Haesen, James; Makela, Tanya; Thomson, Kendra

    2018-06-01

    Limited research has explored how to best train caregivers to support their child with autism spectrum disorder (ASD) despite caregivers being well suited to promote generalization and maintenance of their child's skills in the natural environment. Children with ASD have been shown to benefit from social skill training, which is not always conducted in the natural context. This research examined the efficacy of behavioral skills training (BST) with, and without in situ training (IST), for teaching caregivers how to also use BST to support their child's context-specific social skills. Although caregivers met mastery criterion within BST sessions, their skills did not generalize to the natural environment until IST was introduced. The implications of the findings are discussed.

  6. How Caregivers Make Meaning of Child Mental Health Problems: Toward Understanding Caregiver Strain and Help Seeking.

    Science.gov (United States)

    Mayberry, Lindsay S; Heflinger, Craig Anne

    Family caregivers' conceptualizations of their child's emotional and behavioral problems (EBP) influence help-seeking for the child and caregiver strain. We analyzed 21 interviews with caregivers to explore their conceptualizations about the cause of their child's EBP, their experiences of strain, and their reported help-seeking behaviors. Caregivers had divergent conceptualizations of their child's EBP: 12 caregivers viewed the EBP as caused by a disorder and described the onset of symptoms as the central stressful event, whereas 9 caregivers described their child's problems as a response to an earlier stressor (e.g. trauma, abuse, divorce). Different patterns of caregiver strain and help-seeking were associated with caregiver conceptualization. All caregivers voiced a need for peer-to-peer support for caregivers and youth with EBP.

  7. A Speech-Language Pathologist's Guide to Creating a Support Group for Caregivers of Persons with Dementia

    Science.gov (United States)

    Morrow-Odom, K. Leigh; Robbins, Sarah M.

    2012-01-01

    The purpose of this article is to provide basic guidelines to successfully establish a support group for caregivers of persons with dementia. Support groups should provide its members with a community of support, as well as coping and management strategies to improve daily function of loved ones. This should improve the care provided, and the…

  8. Caregiver Responsiveness to the Family Bereavement Program: What predicts responsiveness? What does responsiveness predict?

    OpenAIRE

    Schoenfelder, Erin N.; Sandler, Irwin N.; Millsap, Roger E.; Wolchik, Sharlene A.; Berkel, Cady; Ayers, Timothy S.

    2013-01-01

    The study developed a multi-dimensional measure to assess participant responsiveness to a preventive intervention, and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 ca...

  9. Working with Family, Friend, and Neighbor Caregivers: Lessons from Four Diverse Communities

    Science.gov (United States)

    Powell, Douglas R.

    2011-01-01

    This article is excerpted from "Who's Watching the Babies? Improving the Quality of Family, Friend, and Neighbor Care" by Douglas R. Powell ("ZERO TO THREE," 2008). The article explores questions about program development and implementation strategies for supporting Family, Friend, and Neighbor (FFN) caregivers: How do programs and their host…

  10. A multinational review of recent trends and reports in dementia caregiver burden.

    Science.gov (United States)

    Torti, Frank M; Gwyther, Lisa P; Reed, Shelby D; Friedman, Joëlle Y; Schulman, Kevin A

    2004-01-01

    This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

  11. A method comparison of photovoice and content analysis: research examining challenges and supports of family caregivers.

    Science.gov (United States)

    Faucher, Mary Ann; Garner, Shelby L

    2015-11-01

    The purpose of this manuscript is to compare methods and thematic representations of the challenges and supports of family caregivers identified with photovoice methodology contrasted with content analysis, a more traditional qualitative approach. Results from a photovoice study utilizing a participatory action research framework was compared to an analysis of the audio-transcripts from that study utilizing content analysis methodology. Major similarities between the results are identified with some notable differences. Content analysis provides a more in-depth and abstract elucidation of the nature of the challenges and supports of the family caregiver. The comparison provides evidence to support the trustworthiness of photovoice methodology with limitations identified. The enhanced elaboration of theme and categories with content analysis may have some advantages relevant to the utilization of this knowledge by health care professionals. Copyright © 2015 Elsevier Inc. All rights reserved.

  12. Outcomes of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers: a goal-oriented approach

    Directory of Open Access Journals (Sweden)

    Chew J

    2015-10-01

    Full Text Available Justin Chew, Mei-Sian Chong, Yoke-Leng Fong, Laura Tay Department of Geriatric Medicine, Institute of Geriatrics and Active Ageing, Tan Tock Seng Hospital, Singapore, Singapore Background: Nonpharmacological interventions such as exercise and cognitive rehabilitation programs have shown promise in reducing the impact of dementia on the individual and the caregiver. In this study, we examine the effect of a multimodal cognitive and physical rehabilitation program for persons with mild dementia and their caregivers using conventional measures of cognition, behavior, quality of life (QoL, and caregiver burden together with goal attainment scaling (GAS, an individualized outcome measure.Methods: Goals were set at baseline, and GAS score was calculated at the end of the program. Participants were also assessed with the Chinese Mini-Mental State Examination, functional and behavioral scales (Barthel Index, Instrumental Activities of Daily Living, Neuropsychiatric Inventory Questionnaire, QoL, and caregiver burden using EuroQol-five dimension questionnaire and Zarit Burden Interview (ZBI. Differences in median scores postintervention were obtained. Further analysis of caregiver burden was undertaken utilizing the multidimensional classification of burden on the ZBI.Results: Thirty-four (61.8% patients were assessed to have met their goals (GAS score ≥50. Mean (standard deviation GAS score was 48.6 (6.5. Cognition goals were set in only 20.6%, followed by goals to improve engagement and socialization; reduce caregiver stress; and improve physical function, behavior, and mood. Median scores in the cognitive, functional, and QoL measures did not differ significantly pre- and postintervention. The intervention had a positive impact on role strain, a unique dimension of caregiver burden.Conclusion: This study provides evidence that a multimodal approach combining physical exercise and cognitive rehabilitation improves goal attainment and caregiver burden

  13. Feasibility and preliminary effects of an intervention targeting schema development for caregivers of newly admitted hospice patients.

    Science.gov (United States)

    Lindstrom, Kathryn B; Mazurek Melnyk, Bernadette

    2013-06-01

    The transition to hospice care is a stressful experience for caregivers, who report high anxiety, unpreparedness, and lack of confidence. These sequelae are likely explained by the lack of an accurate cognitive schema, not knowing what to expect or how to help their loved one. Few interventions exist for this population and most do not measure preparedness, confidence, and anxiety using a schema building a conceptual framework for a new experience. The purpose of this study was to test the feasibility and preliminary effects of an intervention program, Education and Skill building Intervention for Caregivers of Hospice patients (ESI-CH), using an innovative conceptual design that targets cognitive schema development and basic skill building for caregivers of loved ones newly admitted to hospice services. A pre-experimental one-group pre- and post-test study design was used. Eighteen caregivers caring for loved ones in their homes were recruited and twelve completed the pilot study. Depression, anxiety, activity restriction, preparedness, and beliefs/confidence were measured. Caregivers reported increased preparedness, more helpful beliefs, and more confidence about their ability to care for their loved one. Preliminary trends suggested decreased anxiety levels for the intervention group. Caregivers who completed the intervention program rated the program very good or excellent, thought the information was helpful and timely, and would recommend it to friends. Results show promise that the ESI-CH program may assist as an evidence-based program to support caregivers in their role as a caregiver to a newly admitted hospice patient.

  14. Religious Involvement and Adaptation in Female Family Caregivers.

    Science.gov (United States)

    Koenig, Harold G; Nelson, Bruce; Shaw, Sally F; Saxena, Salil; Cohen, Harvey Jay

    2016-03-01

    To examine the relationship between religious involvement (RI) and adaptation of women caring for family members with severe physical or neurological disability. Two-site cross-sectional study. Community. A convenience sample of 251 caregivers was recruited. RI and caregiver adaptation (assessed by perceived stress, caregiver burden, and depressive symptoms) were measured using standard scales, along with caregiver characteristics, social support, and health behaviors. Bivariate and multivariate analyses were conducted to identify relationships and mediating and moderating factors. Religious involvement (RI) was associated with better caregiver adaptation independent of age, race, education, caregiver health, care recipient's health, social support, and health behaviors (B = -0.09, standard error = 0.04, t = -2.08, P = .04). This association was strongest in caregivers aged 58-75 and spouses and for perceived stress in blacks. Religious involvement (RI) in female caregivers is associated with better caregiver adaptation, especially for those who are older, spouses of the care recipients, and blacks. These results are relevant to the development of future interventions that provide support to family caregivers. © 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.

  15. Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

    Science.gov (United States)

    Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

    2016-02-01

    To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

  16. Web-based telemonitoring and delivery of caregiver support for patients with Parkinson disease after deep brain stimulation: protocol.

    Science.gov (United States)

    Marceglia, Sara; Rossi, Elena; Rosa, Manuela; Cogiamanian, Filippo; Rossi, Lorenzo; Bertolasi, Laura; Vogrig, Alberto; Pinciroli, Francesco; Barbieri, Sergio; Priori, Alberto

    2015-03-06

    The increasing number of patients, the high costs of management, and the chronic progress of the disease that prevents patients from performing even simple daily activities make Parkinson disease (PD) a complex pathology with a high impact on society. In particular, patients implanted with deep brain stimulation (DBS) electrodes face a highly fragile stabilization period, requiring specific support at home. However, DBS patients are followed usually by untrained personnel (caregivers or family), without specific care pathways and supporting systems. This projects aims to (1) create a reference consensus guideline and a shared requirements set for the homecare and monitoring of DBS patients, (2) define a set of biomarkers that provides alarms to caregivers for continuous home monitoring, and (3) implement an information system architecture allowing communication between health care professionals and caregivers and improving the quality of care for DBS patients. The definitions of the consensus care pathway and of caregiver needs will be obtained by analyzing the current practices for patient follow-up through focus groups and structured interviews involving health care professionals, patients, and caregivers. The results of this analysis will be represented in a formal graphical model of the process of DBS patient care at home. To define the neurophysiological biomarkers to be used to raise alarms during the monitoring process, neurosignals will be acquired from DBS electrodes through a new experimental system that records while DBS is turned ON and transmits signals by radiofrequency. Motor, cognitive, and behavioral protocols will be used to study possible feedback/alarms to be provided by the system. Finally, a set of mobile apps to support the caregiver at home in managing and monitoring the patient will be developed and tested in the community of caregivers that participated in the focus groups. The set of developed apps will be connected to the already

  17. Challenges, needs, and experiences of recently hospitalized cardiac patients and their informal caregivers.

    Science.gov (United States)

    Blair, Judith; Volpe, Marie; Aggarwal, Brooke

    2014-01-01

    Cardiovascular disease (CVD) is the leading cause of death in the United States. Unpaid family caregivers of patients who experienced a cardiac event may occupy a key position in disseminating continuous health messages to these patients, yet more information is needed to guide the development of educational and behavioral interventions targeting caregivers. The purpose of this qualitative study was to assess the challenges, needs, and personal experiences of cardiac patients and their informal caregivers to explore the types of programs and services that would be most beneficial in promoting adherence to national CVD guidelines among cardiac patients and their caregivers. Patients who had been admitted to the cardiovascular service line of a large urban academic medical center and their informal caregivers (N = 38, 63% women, 74% white) participated in semistructured interviews and focus groups. Participants were asked to speak about 4 major categories of their personal experiences: support, challenges, coping, and program delivery, to determine their needs, the kind of educational interventions that would be most helpful to them, and how they would prefer this information/education to be delivered. Both patients and caregivers ranked diet as the most pressing challenge (91% and 78%, respectively). The Internet, television, and social media were the preferred methods of delivery of such programs. Challenges most commonly cited by caregivers and patients included issues related to taking/administering prescribed medications and medication side effects, and mental stress. Caregivers expressed that not knowing what to expect after the patient's discharge from the hospital was a major stressor. These findings may inform the development of educational interventions targeted to cardiac caregivers so that they may be more effective in assisting the patients in their care to adhere to national CVD prevention guidelines.

  18. Improving Support for America's Hidden Heroes

    Science.gov (United States)

    Terri, Tanielian; Kathryn E., Bouskill; Rajeev, Ramchand; Esther M., Friedman; Thomas E., Trail; Angela, Clague

    2018-01-01

    Abstract The United States is home to more than 21 million veterans, many of whom deployed to support combat operations around the globe during their military service and sustained service-related conditions or disabilities. Supporting these wounded, ill, and injured warriors once home are millions of informal caregivers—individuals who provide unpaid support with activities that enable the service member or veteran to live in a noninstitutionalized setting. In this study, researchers describe elements of a research blueprint to inform future efforts to improve support for military and veteran caregivers. To construct this blueprint, researchers inventoried currently available research on caregiving for disabled adults and children and gathered stakeholder input by conducting a survey and facilitating an online panel. The study highlights the need for more studies that examine how military and veteran caregiver needs evolve over time, how programs are working, and how caregiving affects specific subgroups. The resulting blueprint should serve as a guide for the caregiver support community to use in prioritizing and facilitating future research. PMID:29416949

  19. The Effect of Participation in Support Groups on Depression, Anxiety and Stress in Family Caregivers of People with Alzheimers: Randomized clinical trial

    Directory of Open Access Journals (Sweden)

    Fahimeh Taati

    2016-07-01

    Full Text Available This study sought to determine the effect of participation in support groups on the depression, anxiety and stress level of caregivers of patients with Alzheimer. This study was a single blind randomized clinical controlled trial (RCT with 80 family caregivers of people with Alzheimer’s (per group=40. The intervention group participated in eight sessions 1.5- 2 hours in support groups. The tool used in this study was the DASS-21 questionnaire for measuring depression, anxiety and stress level of the caregivers, analysis of parametric data, using SPSS version 21. Findings showed, participation in support groups showed no significant difference on depression, anxiety and stress in family caregivers of Alzheimer patients in the control group and the intervention group. Given that caring for these patients by their family members are very sensitive and costly issues for policy makers and health service providers, community and families of these patients.

  20. [Perspective of informal caregivers on home care. Qualitative study with a computer program].

    Science.gov (United States)

    Prieto Rodríguez, M Angeles; Gil García, Eugenia; Heierle Valero, Cristina; Frías Osuna, Antonio

    2002-01-01

    A hot debate exists in our country as to the models of home care which must be developed. This study is aimed at ascertaining how the family caregivers of terminal cancer patients, of the elderly suffering from dementia and of individuals having undergone major operations in outpatient surgery programs rate the quality of the home care provided. A phenomenological type qualitative study based on discussion groups (9), triangular groups (5) and in-depth interviews (22). This study was conducted in Andalusia throughout the 1999-2000 period. The subjects of the study were the main caregivers of patients provided with home care through the healthcare centers. The information must be analyzed by means of a Nudist-4 software-aided content analysis. The analysis variables were those of the Servqual model. For the caregivers of cancer patients, the most important aspects of the quality of the home care provided were the Response Capacity and Accessibility. This analysis revealed that the patients suffered pain but the pain was not controlled. Negative aspects hindering accessibility were the lack of home care coverage outside of regular working hours, the difficulty of getting in touch by phone, the length of time it takes for someone to come and the visits solely on request. The caregivers of patients having undergone major outpatient surgery want Security and Reliability. They complain of the short length of time within which the patients are released from the hospital and of the home care provided by the health care center. The caregivers of the elderly with dementia place top priority on being provided with the materials they need to take care of these patients. Caregivers' and patients' expectations differ, depending on health problems, therefore, the type of home care provided should vary, according to the health problems involved. It is necessary to develop a flexible model, capable of adapting to different patient needs and the diverse circumstances that affect

  1. Effects of Support on the Attitude of the Primary Caregiver of a Child with Down Syndrome.

    Science.gov (United States)

    Heritage, Jeannette G.; And Others

    Parents of children with mental or physical handicaps often experience overwhelming feelings of stress and anxiety. Research indicates that support for the primary caregiver can help alleviate some stressors involved in raising a child with a handicap. This study examined how level of support affects feelings of satisfaction the primary caregiver…

  2. Impact of in-home behavioral management versus telephone support to reduce depressive symptoms and perceived stress in Chinese caregivers: results of a pilot study.

    Science.gov (United States)

    Gallagher-Thompson, Dolores; Gray, Heather L; Tang, Paulette C Y; Pu, Chun Yu; Leung, Laurie Y L; Wang, Peng-Chih; Tse, Collins; Hsu, Shannon; Kwo, Elizabeth; Tong, Hui-Qi; Long, James; Thompson, Larry W

    2007-05-01

    Recent work has shown that Chinese Americans caring for a family member with dementia experience considerable psychological distress. However, few studies evaluate treatments for them. This study evaluated the efficacy of in-home intervention, based on cognitive behavior therapy principles, to relieve stress and depression in female Chinese American caregivers (CGs). Fifty-five CGs who met inclusion criteria were randomly assigned to a telephone support condition (TSC) or to an in-home behavioral management program (IHBMP) for 4 months. In the TSC, biweekly calls were made and relevant material was mailed. In the IHBMP, specific psychological skills were taught to deal with caregiving stress. CGs were assessed before and after treatment. Outcome measures evaluated overall perceived stress, caregiving-specific stress, and depressive symptoms. CGs in IHBMP were less bothered by caregiving-specific stressors and had lower depression levels than CGs in TSC. There was no difference in overall stress. CGs with low baseline level of self-efficacy for obtaining respite benefited from IHBMP, but showed little improvement in the TSC. CGs with higher self-efficacy benefited from both treatments. This intervention is promising and warrants replication in future studies. Additional research is needed to evaluate longer-term effects and to identify individual differences associated with improvement.

  3. Supporting someone with an eating disorder: a systematic review of caregiver experiences of eating disorder treatment and a qualitative exploration of burnout management within eating disorder services

    OpenAIRE

    Fowler, Emma

    2016-01-01

    Aims: Eating disorder recovery is often supported by caregivers and mental health professionals. This research portfolio focuses on the experiences of supporting someone with an eating disorder from the perspective of the caregivers and also mental health professionals. The aims of this research portfolio are: Firstly, to systematically review the published qualitative literature relating to the experiences of caregivers supporting someone during eating disorder treatment; and ...

  4. It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI.

    Science.gov (United States)

    Ryerson Espino, Susan L; Kelly, Erin H; Rivelli, Anne; Zebracki, Kathy; Vogel, Lawrence C

    2018-03-01

    Focus group study. Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). One pediatric specialty rehabilitation hospital system in the United States. Four focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo. Qualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers. Data suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.

  5. Predictors of Caregiver Supportive Behaviors towards Reproductive Health Care for Women with Intellectual Disabilities

    Science.gov (United States)

    Lin, Lan-Ping; Lin, Pei-Ying; Chu, Cordia M.; Lin, Jin-Ding

    2011-01-01

    Although many previous studies have begun to address the reproductive health needs of women with intellectual disabilities; however, the supportive behaviors of caregivers to assist their reproductive health is not well understood. Data from a cross-sectional survey of ""2009 National Survey on Reproductive Health Care Needs and Health…

  6. Tacit definitions of informal caregiving.

    Science.gov (United States)

    Wrubel, J; Richards, T A; Folkman, S; Acree, M C

    2001-01-01

    This study describes three tacit definitions of informal caregiving and explores the extent to which differences in these tacit definitions explain variation in caregivers' negative mood over time. There is a growing need to understand the sources of stress and gratification for informal caregivers. Tacit definitions of informal caregiving refer to caregivers' understanding of what caregiving entails. These definitions are tacit because they arise from caregivers' taken-for-granted understanding rather than formally articulated positions concerning caregiving. A random sample of 60 men, all of whom were caregiving partners of men with acquired immunodeficiency syndrome (AIDS), was drawn from a larger cohort of 253 participants in the University of California San Francisco (UCSF) Coping Project (1990-1997). The caregivers were assessed bimonthly for 2 years with procedures that included a semi-structured interview focusing on a recent stressful event involving caregiving, and quantitative measures of well-being. Interpretive phenomenological case studies of the narrative accounts of the 60 caregivers produced three tacit definitions of caregiving - engagement, conflict and distance. These three tacit definitions were distinguished by differences in learning about caregiving, involvement in health care decisions, caregiving activities and reported sources of stress. The three groups differed on measures of dyadic adjustment, depression, anger and anxiety. Better understanding of caregivers' tacit definitions can facilitate and enhance effective support and interventions for caregivers.

  7. Perception of human activities : a means to support connectedness between the elderly and their caregivers

    NARCIS (Netherlands)

    Davis, Kadian; Owusu, E.B.; Regazzoni, C.S.; Marcenaro, Lucio; Feijs, Loe; Hu, Jun; Holzinger, Andreas; Röcker, Carsten; Fred, Ana; Helfert, Markus; O'Donoghue, John; Ziefle, Martina

    2015-01-01

    This position paper describes a smart-phone based activity recognition system for improving social connectedness between caregivers and their elderly relatives. Sensing technologies can enable real-time monitoring to provide activity recognition in order to support health and safety among the

  8. Meaning of care for terminally Ill HIV-infected patients by HIV-infected peer caregivers in a simulation-based training program in South Korea.

    Science.gov (United States)

    Kim, Sunghee; Shin, Gisoo

    2015-01-01

    The purpose of this study was to develop a simulation-based training program for people living with HIV (PLWH) as peer caregivers who would take care of terminally ill, HIV-infected patients. We used qualitative research methods and standardized patients to explore the meaning of caring for patients as peer caregivers. Study participants included 32 patients registered as PLWH at the South Korea Federation for HIV/AIDS. The meanings of peer caregiving were categorized into four dimensions: physical, psychological, relational, and economic. Our study had benefits in knowledge acquisition for caregivers as well as care recipients, empathy with HIV-infected care recipients, improvement in self-esteem and social participation, and financial self-sufficiency to enable independent living for caregivers. The simulation training program for PLWH peer caregivers for terminally ill HIV-infected patients demonstrated value, for both PLWH caregivers and terminally ill HIV-infected patients in South Korea, to improve the quality of care. Copyright © 2015 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

  9. Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington's Disease.

    Science.gov (United States)

    Kavanaugh, Melinda S; Noh, Hyunjin; Zhang, Lixia

    2016-01-01

    Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles ("young carers" or "caregiving youth"). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10-20, who have a parent with Huntington's disease (HD), provided information about their knowledge of the presence of their ill parent's living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent's LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent's wishes, caregiving youths' opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.

  10. Urban caregiver empowerment: Caregiver nativity, child-asthma symptoms, and emergency-department use.

    Science.gov (United States)

    Coutinho, Maria Teresa; Kopel, Sheryl J; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

    2016-09-01

    In this study, we examined the associations between caregiver empowerment, child-asthma symptoms, and emergency-department (ED) use in a sample of school-age urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child-asthma symptoms, and ED use as a function of caregiver nativity. Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7-9; N = 130). Caregiver empowerment was assessed within family, asthma services, and community domains. Children whose caregivers reported greater empowerment within the family (i.e., possessing sufficient knowledge and ability to care for their families) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (i.e., the ability to collaborate with asthma providers and the health-care system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, whereas U.S.-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child-asthma symptoms. For U.S.-born caregivers, higher levels of empowerment in asthma services were associated with more child-asthma symptoms. Results suggest that caregivers who feel more confident and better able to manage problems within their families may better manage their children's asthma symptoms. Foreign-born caregivers may benefit from increased support to more effectively navigate the asthma health-care system and manage their children's asthma. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

  11. Self-administered acupressure for symptom management among Chinese family caregivers with caregiver stress: a randomized, wait-list controlled trial.

    Science.gov (United States)

    Tiwari, Agnes; Lao, Lixing; Wang, Amy Xiao-Min; Cheung, Denise Shuk Ting; So, Mike Ka Pui; Yu, Doris Sau Fung; Lum, Terry Yat Sang; Yuk Fung, Helina Yin King; Yeung, Jerry Wing Fai; Zhang, Zhang-Jin

    2016-10-28

    Caregiving can be stressful, potentially creating physical and psychological strain. Substantial evidence has shown that family caregivers suffer from significant health problems arising from the demands of caregiving. Although there are programs supporting caregivers, there is little evidence regarding their effectiveness. Acupressure is an ancient Chinese healing method designed to restore the flow of Qi (vital energy) by applying external pressure to acupoints. A randomized, wait-list controlled trial was developed to evaluate the effectiveness of a self-administered acupressure intervention on caregiver stress (primary objective) and stress-related symptoms of fatigue, insomnia, depression, and health-related quality of life (secondary objectives) in Chinese caregivers of older family members. Two hundred Chinese participants, aged ≥ 21 years, who are the primary caregivers of an older family member and screen positive for caregiver stress and symptoms of fatigue/insomnia/depression will be recruited from a community setting in Hong Kong. Subjects will be randomized to receive either an immediate treatment condition (self-administered acupressure intervention) or a wait-list control condition. The self-administered acupressure intervention will include (i) an individual learning and practice session twice a week for 2 weeks, (ii) a home follow-up visit once a week for 2 weeks, and (iii) 15-min self-practice twice a day for 6 weeks. The wait-list control group will receive the same acupressure training after the intervention group has completed the intervention. We hypothesize that Chinese family caregivers in the intervention group will have lower levels of caregiver stress, fatigue, insomnia, depression, and higher health-related quality of life after completion of the intervention than participants in the wait-list control group. This study will provide evidence for the effectiveness of self-administered acupressure in reducing stress and improving

  12. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis.

    LENUS (Irish Health Repository)

    Galvin, Miriam

    2018-01-27

    Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course.

  13. Adapters, strugglers, and case managers: a typology of spouse caregivers.

    Science.gov (United States)

    Davis, Linda Lindsey; Chestnutt, Deborah; Molloy, Margory; Deshefy-Longhi, Tess; Shim, Bomin; Gilliss, Catherine L

    2014-11-01

    Although family home care problems are frequently described in the health care literature, the ways in which families and other informal caregivers manage those problems are not often addressed. We conducted a descriptive analysis of interviews in which spouses caring for a partner with Alzheimer's or Parkinson's disease were asked to describe difficult home care problems and how they managed those problems. Analysis of these interviews indicated three recurring management styles. Adapters told stories about applying pre-existing skills to manage home care problems. Strugglers told stories of reoccurring home care problems for which they had few or no management strategies. Case managers' interview stories focused on the challenges of finding and coordinating home care services. These findings suggest that caregiving burden might be influenced more by the caregiver's management style than the demands of the care situation. Suggestions for tailoring support programs for the three types of caregivers are proposed. © The Author(s) 2014.

  14. Caregiver Self-Esteem as a Predictor of Patient Relationship Satisfaction: A Longitudinal Study.

    Science.gov (United States)

    Mroz, Emily L; Poulin, Michael J; Grant, Pei C; Depner, Rachel M; Breier, Jennifer; Byrwa, David J; Wright, Scott T

    2018-03-01

    Longitudinal assessment of patient-caregiver relationships will determine whether caregiver self-esteem determines patient relationship satisfaction at end of life. Research on close relationships and caregiving supports the idea that informal caregivers' self-esteem may influence their relationships with their terminally ill loved ones. However, this connection has not yet been investigated longitudinally, nor has it been applied specifically to care recipients' relationship satisfaction. A sample of 24 caregivers and 24 patients in a hospice home care program were recruited. Multiple patient and caregiver interviews were used to conduct a longitudinal study to measure fluctuations in patient health, changes in patient and caregiver relationship satisfaction, and self-esteem over a three-month period. An interaction between caregiver self-esteem and patient relationship satisfaction demonstrated the role that self-esteem plays between caregivers and patients enrolled in hospice care. Specifically, for patients with caregivers with low self-esteem, patient relationship satisfaction significantly decreased as the patient's physical health decreased, whereas for patients whose caregivers had high self-esteem, patient relationship satisfaction marginally increased during poorer physical health. High self-esteem may allow caregivers to overcome feelings of burden and maladaptive anticipatory grief to remain satisfied in their relationship with the patient. Caregiver self-esteem appears to play a role in fostering patient relationship satisfaction at the end of life.

  15. Rural women caregivers in Canada.

    Science.gov (United States)

    Crosato, Kay E; Leipert, Beverly

    2006-01-01

    Informal caregiving within rural contexts in Canada is increasing. This is due in part to a number of factors related to the restructuring of the Canadian health care system, the regionalization of services to urban locations, the increased population of people 65 years and older, and the desire of this population to age within their rural homes. Most often, the informal caregiving role is assumed by rural women. Women tend to fall into the role of informal caregiver to elders because of the many societal and gender expectations and values that are present within the rural culture. The purpose of this literature review is to identify the context in which women provide care for an elder in rural Canada. Illustrating these issues will help to uncover challenges and barriers rural women face when providing care and highlight recommendations and implications for rural women caregivers and nurses employed within rural settings. Many rural women share similar caregiving experiences as urban informal caregivers, but rural women are faced with additional challenges in providing quality care for an elder. Rural women caregivers are faced with such issues as limited access to adequate and appropriate healthcare services, culturally incongruent health care, geographical distance from regionalized centers and health services, transportation challenges, and social/geographical isolation. In addition to these issues, many rural women are faced with the multiple role demands that attend being a wife, mother, caregiver and employee. The pile up of these factors leaves rural women caregivers susceptible to additional stresses and burn out, with limited resources on which to depend. Through reviewing pertinent literature, appropriate implications and recommendations can be made that may assist rural women caregivers and rural nurses. Nurses working within rural communities are in ideal settings to work collaboratively in building supportive relationships with rural women in order to

  16. A family-oriented treatment program for youths with ketamine abuse and their caregivers: a pilot study in Taiwan

    Directory of Open Access Journals (Sweden)

    Wang LJ

    2015-07-01

    Full Text Available Liang-Jen Wang,1 Shing-Fang Lu,1 Wen-Jiun Chou,1 Mian-Yoon Chong,2 Yao-Hsing Wang,1 Yu-Lian Hsieh,1 Yi-Hsuan Lee,1 Ching Chen2 1Department of Child and Adolescent Psychiatry, 2Department of Psychiatry, Kaohsiung Chang Gung Memorial Hospital and Chang Gung University College of Medicine, Kaohsiung, Taiwan Objective: The abuse of ketamine by youths has grown into a serious public health issue. However, a reliable and efficient treatment has still not been found for youths who abuse ketamine. This pilot study investigated the effects of a family-oriented treatment program for ketamine-using youths and their caregivers.Methods: To carry out this study, 42 youths with ketamine use (mean age 16.6±1.1 years who were referred to take part in a 10-week treatment program based on motivational enhancement principles were selected, as were their principal caregivers (mean age 46.4±7.1 years, who were similarly referred to take part in a 10-week training program for parenting skills. The study had the youths complete the Chinese Craving Beliefs Questionnaire, the Adolescents’ Behavior problem Scale, and the Family APGAR both immediately before and after the program. Likewise, the youths’ caregivers completed the Family APGAR, the 12-item version of the Chinese Health Questionnaire, and the Parenting Stress Index.Results: Of the 42 youth–caregiver pairs that took part in this study, 37 (88% completed the 10-week program and both sets of assessments. After the treatment, the participating youths’ substance cravings declined (t=3.88, P<0.001, while family function, as perceived by the participating caregivers, significantly increased (t=2.22, P=0.033. The improvement in caregivers’ perceptions of family function were positively related to the improvement of the caregivers’ health status (r=-0.36, P=0.022.Conclusion: According to its results, this pilot study submits that family-oriented treatment programs may be considered a potentially effective

  17. Caregiver burden and need of support among family members of persons living with HIV : A qualitative study

    OpenAIRE

    Grafström, Anna; Petersson, Sofia

    2012-01-01

    Abstract Introduction: Vietnam has one of the fastest growing HIV- epidemics in the world. In Vietnam the primary caregivers are the family. Aim:  The aim was to examine caregiver burden and need of support among family members of persons living with HIV [PLHIV] in Ho Chi Minh City, and also to investigate the differences in these matters between genders. Method:  A descriptive cross-sectional study with quantitative method was used. The study was carried out at the Hospital of Tropical Disea...

  18. A pilot trial of a stress management intervention for primary caregivers of children newly diagnosed with cancer: preliminary evidence that perceived social support moderates the psychosocial benefit of intervention.

    Science.gov (United States)

    Marsland, Anna L; Long, Kristin A; Howe, Chelsea; Thompson, Amanda L; Tersak, Jean; Ewing, Linda J

    2013-05-01

    (1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived stress at both pre-intervention (T1; mean = 24 days post-diagnosis) and post-intervention time points (T2; mean = 165 days post-diagnosis). Enrollment, retention, and satisfaction data support feasibility and acceptability of the intervention. There was no overall significant impact of participation in the intervention on levels of distress at T2. However, T1 social support moderated intervention response, with caregivers who perceived lower T1 support showing greater psychological benefit from the intervention. Primary caregivers with lower levels of perceived social support may benefit from preemptive stress management intervention.

  19. [Evaluation of the primary caregiver syndrome when caring for elderly adults with immobility syndrome].

    Science.gov (United States)

    Morales-Cariño, Elizabeth María; Jiménez-Herrera, Blanca L; Serrano-Miranda, Tirzo A

    2012-01-01

    Caregiver syndrome may develop in caregivers of elderly adults. To evaluate the repercussions of the immobility syndrome present in elderly adults on their primary caregivers as well as to determine the clinical and socio-demographic characteristics of the elderly adult and caregiver. The study population included patients over 65 recruited in the Geriatric Rehabilitation Department, with the diagnosis of immobility syndrome and that required a primary caregiver. A questionnaire including socio-demographic variables was applied to all patients and caregivers, and the Zarit scale was also applied to caregivers in order to determine the presence of caregiver syndrome. Analysis was performed with descriptive statistical methods; Student's t test and Fisher's test were used for comparisons between strata. 75 patients and their caregivers were evaluated; patient average age was 75.9 years and 85.3% were female. 50.7% (38 cases) had mild immobility. The average caregiver's age was 50.6%, 70.7% were female and 57.3% were the patient's daughter. Caregiver syndrome was detected in 60% of them: 57.7% had mild symptoms and in 42.2%, symptoms were moderate to severe. No statistically significant association was established between the development of caregiver syndrome and the degree of patient immobility. Caregivers of patients with immobility syndrome are at high risk of developing caregiver syndrome, thus underscoring the need to include primary caregiver support programs.

  20. Deployment of military mothers: supportive and nonsupportive military programs, processes, and policies.

    Science.gov (United States)

    Goodman, Petra; Turner, Annette; Agazio, Janice; Throop, Meryia; Padden, Diane; Greiner, Shawna; Hillier, Shannon L

    2013-07-01

    Military mothers and their children cope with unique issues when mothers are deployed. In this article, we present mothers' perspectives on how military resources affected them, their children, and their caregivers during deployment. Mothers described beneficial features of military programs such as family readiness groups and behavioral health care, processes such as unit support, and policies on length and timing of deployments. Aspects that were not supportive included inflexibility in family care plans, using personal leave time and funds for transporting children, denial of release to resolve caretaker issues, and limited time for reintegration. We offer recommendations for enhanced support to these families that the military could provide. Reprint & Copyright © 2013 Association of Military Surgeons of the U.S.

  1. Perceptions, attitudes and experiences of family caregivers of patients with musculoskeletal diseases: a qualitative approach.

    Science.gov (United States)

    Alfaro, Noelia; Lázaro, Pablo; Gabriele, Giovanna; Garcia-Vicuña, Rosario; Jover, Juan Ángel; Sevilla, Jordi

    2013-01-01

    To determine the perceptions, attitudes and experiences among family caregivers of patients with musculoskeletal diseases (MSD). Descriptive, exploratory, qualitative study. Two discussion groups were organized with family caregivers of MSD patients, representing the caregiver profile: gender (men/women) and age (31-45 years/46-65 years); and patient profiles: MSD type (rheumatoid arthritis/ankylosing spondylitis), work status (yes or no for the variables housewife, at least 3 episodes of sick leave, patients who abandoned their work, and patients with permanent work disability). A content analysis based on the Grounded Theory was done to detect and explore emerging categories. The emerging dimensions were: alterations in daily life activities, need for caregiver support, physical and psychological impact on the caregiver, characteristics of the patient, and several aspects of care. Relevant experiences mentioned were: the diagnosis of a MSD changes the patient and their family members' life affecting work, financial, social, psychological and physical spheres, making it necessary help for basic activities of daily living. Early age at onset or severe MSDs require dedication and effort on the part of caregivers which increases with time. This leads to a great emotional overload on the caregivers, which may be modulated by the support they receive when providing care. The primary consequences for caregivers are loss of purchasing power, work problems, social isolation and emotional stress. Programs for effective at-home support need to be developed with streamlined administrative processes to quickly classify the level of disability and provide official assistance. Copyright © 2012 Elsevier España, S.L. All rights reserved.

  2. The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder

    Directory of Open Access Journals (Sweden)

    Carolyn Dudley

    2014-01-01

    expensive condition and governments may underestimate the full cost of community-based supports needed for the vast range of unique needs of those living with autism. A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders. Gaps are particularly evident once individuals leave the public school system, where they are at least provided with some form of day support. Sufficient adult day supports, evening and night supports, quality group homes, the availability of properly trained caregivers and respite services, recreational activities, post-secondary opportunities and employment supports all suffer varying levels of inadequacy across the country. As autism becomes increasingly prevalent, continuing to rely largely on family supports where community services are fragmented or unavailable is not a sustainable approach. Canadian policy-makers will need to consider the costs of a growing and aging population of individuals living with autism who need a range of supports so that adequate quality of care and a decent quality of life are enjoyed by many who remain some of this country’s most vulnerable citizens.

  3. Improving Support for America's Hidden Heroes: A Research Blueprint.

    Science.gov (United States)

    Terri, Tanielian; Kathryn E, Bouskill; Rajeev, Ramchand; Esther M, Friedman; Thomas E, Trail; Angela, Clague

    2018-01-01

    The United States is home to more than 21 million veterans, many of whom deployed to support combat operations around the globe during their military service and sustained service-related conditions or disabilities. Supporting these wounded, ill, and injured warriors once home are millions of informal caregivers-individuals who provide unpaid support with activities that enable the service member or veteran to live in a noninstitutionalized setting. In this study, researchers describe elements of a research blueprint to inform future efforts to improve support for military and veteran caregivers. To construct this blueprint, researchers inventoried currently available research on caregiving for disabled adults and children and gathered stakeholder input by conducting a survey and facilitating an online panel. The study highlights the need for more studies that examine how military and veteran caregiver needs evolve over time, how programs are working, and how caregiving affects specific subgroups. The resulting blueprint should serve as a guide for the caregiver support community to use in prioritizing and facilitating future research.

  4. Reducing the distance in distance-caregiving by technology innovation

    Directory of Open Access Journals (Sweden)

    Lazelle E Benefield

    2007-07-01

    Full Text Available Lazelle E Benefield1, Cornelia Beck21College of Nursing, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA; 2Pat & Willard Walker Family Memory Research Center, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USAAbstract: Family caregivers are responsible for the home care of over 34 million older adults in the United States. For many, the elder family member lives more than an hour’s distance away. Distance caregiving is a growing alternative to more familiar models where: 1 the elder and the family caregiver(s may reside in the same household; or 2 the family caregiver may live nearby but not in the same household as the elder. The distance caregiving model involves elders and their family caregivers who live at some distance, defined as more than a 60-minute commute, from one another. Evidence suggests that distance caregiving is a distinct phenomenon, differs substantially from on-site family caregiving, and requires additional assistance to support the physical, social, and contextual dimensions of the caregiving process. Technology-based assists could virtually connect the caregiver and elder and provide strong support that addresses the elder’s physical, social, cognitive, and/or sensory impairments. Therefore, in today’s era of high technology, it is surprising that so few affordable innovations are being marketed for distance caregiving. This article addresses distance caregiving, proposes the use of technology innovation to support caregiving, and suggests a research agenda to better inform policy decisions related to the unique needs of this situation.Keywords: caregiving, family, distance, technology, elders

  5. Traumatic brain injury: caregivers' problems and needs.

    Science.gov (United States)

    Hassan, S T S; Khaw, W F; Rosna, A R; Husna, J

    2011-01-01

    Traumatic brain injury (TBI) is an increasingly major world health problem. This short review using the most pertinent articles on TBI caregiving problems and needs highlights the pressing issues. Articles focusing on both TBI-caregivers' problems and needs are rarely found, especially for developing countries. Most TBI-caregiving is done by family members, whose altered lives portend burden and stresses which add to the overwhelming demand of caring for the TBI-survivor. Lack of information, financial inadequacy, anxiety, distress, coping deficits, poor adaptability, inadequate knowledge and skills, and a poor support system comprise the major problems. Dysfunctional communication between caregivers and care-receivers has been little researched. The major needs are focused on health and rehabilitation information, financial advice and assistance, emotional and social support, and positive psychological encouragement. In time, health information needs may be met, but not emotional support. Information on TBI caregiving problems and unmet needs is critical to all relevant healthcare stakeholders.

  6. Systematic care for caregivers of people with dementia in the ambulatory mental health service: designing a multicentre, cluster, randomized, controlled trial.

    NARCIS (Netherlands)

    Spijker, A.; Verhey, F.; Graff, M.J.L.; Grol, R.P.T.M.; Adang, E.M.M.; Wollersheim, H.C.H.; Vernooy-Dassen, M.J.F.J.

    2009-01-01

    BACKGROUND: Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of

  7. Patient and caregiver perspectives on decision support for symptom and quality of life management during cancer treatment: Implications for eHealth.

    Science.gov (United States)

    Cooley, Mary E; Nayak, Manan M; Abrahm, Janet L; Braun, Ilana M; Rabin, Michael S; Brzozowski, Jane; Lathan, Christopher; Berry, Donna L

    2017-08-01

    Adequate symptom and quality-of-life (SQL) management is a priority during cancer treatment. eHealth is a timely way to enhance patient-engagement, facilitate communication, and improve health outcomes. The objectives of this study were to describe patient and caregivers' perspectives for providing, processing, and managing SQL data to enhance communication and identify desired components for decision support. Data were collected from 64 participants through questionnaires and focus groups. Analysis was conducted using NVivo. Open and axial coding was completed, grouping commonalities and large constructs into nodes to identify and synthesize themes. Face-to-face meetings with clinicians were the prime time to communicate, and patients strove to understand treatment options and the effect on SQL by bringing caregivers to their visits, taking notes, tracking symptoms, and creating portable health records. Patients/caregivers struggled to self-manage their symptoms and were uncertain when to contact clinicians when experiencing uncontrolled symptoms. Most participants identified eHealth solutions for decision support. However, 38% of participants (n = 24) rarely used computers and identified non-eHealth options for decision support. Core components for both eHealth and non-eHealth systems were access to (1) cancer information, (2) medical records, (3) peer support, and (4) improved support and understanding on when to contact clinicians. Patients were faced with an overwhelming amount of information and relied on their caregivers to help navigate the complexities of cancer care and self-manage SQL. Health technologies can provide informational support; however, decision support needs to span multiple venues to avoid increasing disparities caused by a digital divide. Copyright © 2017 John Wiley & Sons, Ltd.

  8. The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS.

    Science.gov (United States)

    Sharer, Melissa; Cluver, Lucie; Shields, Joseph J; Ahearn, Frederick

    2016-03-01

    Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.

  9. Productivity loss of caregivers of schizophrenia patients: a cross-sectional survey in Japan.

    Science.gov (United States)

    Sruamsiri, Rosarin; Mori, Yasuhiro; Mahlich, Jörg

    2018-04-27

    When a family member is diagnosed with schizophrenia, it causes stress to the caregiver that can eventually result in missed work days and lower work performance. This study aims at revealing productivity costs for caregivers of schizophrenia patients in Japan. A cross-sectional survey of caregivers was conducted and resulted in 171 respondents. The assessment of work productivity included calculating the costs of absenteeism, presenteeism and total productivity costs. This was accomplished using the "Work Productivity and Activity Impairment Questionnaire" (WPAI). A relative majority of caregivers in the sample provided care for their spouse (47%), 18% cared for their brother or sister and 16% provided care for their child. Per capita productivity costs totaled JPY 2.42 million, with JPY 2.36 million (97%) of that amount being due to presenteeism. The burden on caregivers is substantial enough to warrant structured support programs aimed at maintaining careers' physical and mental health, helping them provide more effective care to schizophrenia patients and eventually increase productivity at work.

  10. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives.

    Science.gov (United States)

    House, L A; Russell, H F; Kelly, E H; Gerson, A; Vogel, L C

    2009-12-01

    Cross-sectional survey. To examine caregivers' perspectives on the effectiveness of rehabilitative support experienced by youth with spinal cord injury (SCI) during acute rehabilitation and after community reintegration in terms of their community participation. Data collection took place at the three Shriners SCI hospitals: Chicago, Philadelphia, and Northern California. A total of 132 primary caregivers of youth with SCI completed a survey on what their child had experienced during and after rehabilitation to enhance their community participation. Caregivers found technical support from staff (41%), motivation and encouragement from staff (25%), and education (17%) to be the most important factors during rehabilitation for encouraging their child's future participation in school or community activities. Caregivers found involvement in activities (30%), personal resilience (22%) and interactions with others with disabilities (13%) to be important experiences since rehabilitation in terms of their child's participation in school and community activities. Caregivers who responded that something they experienced during rehabilitation was helpful to participation had children who had been injured longer and who were older at time of injury. In addition, caregivers who reported that something they have experienced since their child's rehabilitation has been helpful in terms of participation also had children who were older at time of injury. Findings from this study can be used to help professionals tailor rehabilitation programs to better meet the needs of youth with SCI and their families, thereby increasing chances of successful reintegration back into their communities.

  11. A Pilot Trial of a Stress Management Intervention for Primary Caregivers of Children Newly Diagnosed With Cancer: Preliminary Evidence That Perceived Social Support Moderates the Psychosocial Benefit of Intervention

    OpenAIRE

    Marsland, Anna L.; Long, Kristin A.; Howe, Chelsea; Thompson, Amanda L.; Tersak, Jean; Ewing, Linda J.

    2013-01-01

    Objectives (1) To examine the acceptability and feasibility of a stress management intervention for caregivers of children recently diagnosed with cancer. (2) To explore whether caregivers with lower baseline perceived social support derive greater benefit from the intervention than those with higher perceived support. Methods 45 primary caregivers were randomly assigned to intervention or standard care. Of these, 37 completed measures of social support, depression, anxiety, and perceived str...

  12. Elder care and the impact of caregiver strain on the health of employed caregivers.

    Science.gov (United States)

    Duxbury, Linda; Higgins, Christopher; Smart, Rob

    2011-01-01

    As the baby-boom generation moves towards middle age, and their parents toward old age, the number of employees who combine care for an elderly dependant and work will increase in number. These employees are "at risk" of experiencing caregiver strain. This paper advances our understanding of these trends by examining the relationship between caregiver strain and the health of employed caregivers. Our study involved the analysis of data from the 2001 Canadian National Work, Family and Lifestyle Study (N= 31,517). MANOVA was used to determine the relationship between caregiver strain and three situational factors: (1) gender; (2) where the care recipient lives compared to the caregiver; and, (3) family type. Regression was used to determine the relationship between caregiver strain and mental health. We found that caregiver strain depends on gender, family type and location of care. Emotional strain was a significant predictor of mental health. These findings support the need for organizations to expand their thinking around work-life balance to include employees who have eldercare responsibilities.

  13. Caregiver Burden Among Caregivers of Individuals With Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience.

    Science.gov (United States)

    Mulud, Zamzaliza Abdul; McCarthy, Geraldine

    2017-02-01

    The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n=201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden. Copyright © 2016 Elsevier Inc. All rights reserved.

  14. Effectiveness of an online social support intervention for caregivers of people with dementia: the study protocol of a randomised controlled trial.

    Science.gov (United States)

    Dam, Alieske E H; de Vugt, Marjolein E; van Boxtel, Martin P J; Verhey, Frans R J

    2017-08-29

    Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T 0 ) and at 8-week (T 1 ), 16-week (T 2 ) and 42-week follow up (T 3 ). The 16-week follow-up assessment (T 2 ) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. Dutch trial register, NTR6131 . Registered on 20 October 2016.

  15. Leisure activities, caregiving demands and catecholamine levels in dementia caregivers.

    Science.gov (United States)

    Chattillion, Elizabeth A; Mausbach, Brent T; Roepke, Susan K; von Känel, Roland; Mills, Paul J; Dimsdale, Joel E; Allison, Matthew; Ziegler, Michael G; Patterson, Thomas L; Ancoli-Israel, Sonia; Grant, Igor

    2012-01-01

    This study examined whether satisfaction from leisure activities moderates the relationship between caregiving demands (i.e., hours per day spent caring for a spouse with dementia) and resting levels of the catecholamines norepinephrine (NE) and epinephrine (EPI). Spousal caregivers (n = 107; mean age = 73.95 ± 8.12 years) were assessed in home for plasma levels of NE and EPI, amount of care provided, and leisure satisfaction. Regression was used to determine whether leisure satisfaction moderated the relationship between hours providing care per day and catecholamine levels. A significant interaction was found between hours caregiving and leisure satisfaction for NE, but not for EPI. Post hoc regressions were conducted for both NE and EPI. At low leisure satisfaction, time spent caring for a spouse was positively associated with plasma NE (β = 0.41; p = 0.005) and EPI (β = 0.44; p = 0.003). In contrast, at high levels of satisfaction, time caregiving was not significantly associated with plasma NE (β = -0.08; p = 0.57) or EPI (β = 0.23; p = 0.12). These findings suggest that leisure satisfaction may protect caregivers from increases in catecholamines, which have been implicated in cardiovascular risk. Further support for these findings may impact psychological treatments for distressed caregivers.

  16. Access to diagnosis, treatment, and supportive services among pharmacotherapy-treated children/adolescents with ADHD in Europe: data from the Caregiver Perspective on Pediatric ADHD survey

    Directory of Open Access Journals (Sweden)

    Fridman M

    2017-03-01

    Full Text Available Moshe Fridman,1 Tobias Banaschewski,2 Vanja Sikirica,3 Javier Quintero,4 Kristina S Chen5 1AMF Consulting, Inc., Los Angeles, CA, USA; 2Department of Child and Adolescent Psychiatry and Psychotherapy, Central Institute of Mental Health, Medical Faculty Mannheim of the University of Heidelberg, Mannheim, Germany; 3Global Health Economics Outcomes Research and Epidemiology, Shire, Wayne, PA, USA; 4Psychiatry Department, Hospital Universitario Infanta Leonor, Complutense University, Madrid, Spain; 5Global Health Economics Outcomes Research and Epidemiology, Shire, Lexington, MA, USA Background: Attention-deficit/hyperactivity disorder (ADHD is one of the most common childhood psychiatric disorders and negatively impacts caregivers’ lives. Factors including barriers to accessing care, dissatisfaction with support services, and lack of caregiver resources may contribute to this.Objectives: To report caregivers’ experiences of ADHD diagnosis, behavioral therapy (BT, and supportive care for children/adolescents with ADHD.Methods: The Caregiver Perspective on Pediatric ADHD (CAPPA survey included caregivers of children/adolescents (6–17 years from ten European countries who were currently receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers reported experiences of obtaining an ADHD diagnosis, access to BT, availability of caregiver resources, and level of health care/school support. Pan-EU and country-specific descriptive statistics are reported; responses were compared across countries.Results: Of 3,616 caregivers, 66% were female. Mean age of children/adolescents was 11.5 years; 80% were male. Mean time from the first doctor visit to diagnosis was 10.8 (95% confidence interval 10.2, 11.3 months; 31% of caregivers reported the greatest degrees of difficulty in obtaining an ADHD diagnosis; 44% of children/adolescents did not receive BT. Forty-seven percent of caregivers reported that sufficient resources were available

  17. [Ebola crisis in Guinea: psychosocial support for patients and caregivers].

    Science.gov (United States)

    Benifei, Sarah; Facon-Delahaye, Aline; Vautier, Virginie

    2016-02-01

    The experience of the French military health service in the fight against the Ebola epidemic in Guinea, highlights the importance of what favours the emergence of an institutional life in a context of care faced with numerous constraints and extraordinary challenges. The meticulous drawing up of procedures and the juxtaposition of expertise goes hand in hand with the construction of a triangular care system (caregivers-patients-families). This relational approach ensures each player in this system is able to find their place and a balance between constraints and satisfactions, losses and successes, isolation and support. This balance seems to favour individual and group resilience. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  18. Economic expenditures associated with instrumental caregiving roles of adult siblings of persons with severe mental illness.

    Science.gov (United States)

    Lohrer, Steven P; Lukens, Ellen P; Thorning, Helle

    2007-04-01

    Siblings of persons with mental illness who assume primary caregiving roles experience substantial and tangible economic impacts associated with this responsibility. This study investigated mailed survey responses collected from 156 adult siblings of persons with mental illness from New York State to examine instrumental costs associated with providing support to siblings with illness. Genders of both siblings, severity of the relatives' mental illness, and number of surviving parents in the family distinguished those occupying primary caregiving responsibility from those not in primary roles. Current caregivers incurred greater instrumental costs in the form of financial expenses, time spent in care activities, and crisis involvement than did those who were not primary care providers. Additional demographic and behavioral factors related to siblings with and without illness were associated with specific dimensions of instrumental expenditure. As siblings become increasingly engaged in caregiving, social service professionals must assume leadership in promoting programs and policies that meaningfully support family involvement for relatives with mental illness.

  19. A remote care platform for the social support program CASSAUDEC

    Directory of Open Access Journals (Sweden)

    Andrés Felipe Ardila Rodríguez

    2016-06-01

    Full Text Available The training strategies developed for the social support program bring deficits in accessibility to the chronic ill patients (EC and the CASSA-UDEC’s caretaker (CASSA-UDEC: Centre for Social Health Care at Universidad de Cundinamarca they do not have time to commute, hindering their legal relationship established by the contract. For this reason, a remote care platform (PTD was developed to support users at CASSA-UDEC improving aspects related to coverage, cost, quality, access and appropriation of information from caregivers and chronic ill patients. The design was based on gerontological constructs identifying features such as modularity, object size, usability, ergonomics, and some others, providing a friendly platform for the user with dynamic, modular and high usability content. The Platform provides a space for interaction and aid, which works as a dynamic entity in the job done by CASSA-UDEC giving support in the development of activities, expanding its coverage, access; all thanks to the benefits offered in a virtual mode.

  20. In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

    Science.gov (United States)

    Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

    2016-09-23

    Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

  1. Caregiving Practice Patterns of Asian, Hispanic, and Non-Hispanic White American Family Caregivers of Older Adults Across Generations.

    Science.gov (United States)

    Miyawaki, Christina E

    2016-03-01

    This study is a cross-sectional investigation of caregiving practice patterns among Asian, Hispanic and non-Hispanic White American family caregivers of older adults across three immigrant generations. The 2009 California Health Interview Survey (CHIS) dataset was used, and 591 Asian, 989 Hispanic and 6537 non-Hispanic White American caregivers of older adults were selected. First, descriptive analyses of caregivers' characteristics, caregiving situations and practice patterns were examined by racial/ethnic groups and immigrant generations. Practice patterns measured were respite care use, hours and length of caregiving. Three hypotheses on caregiving patterns based on assimilation theory were tested and analyzed using logistic regression and generalized linear models by racial/ethnic groups and generations. Caregiving patterns of non-Hispanic White caregivers supported all three hypotheses regarding respite care use, caregiving hours and caregiving duration, showing less caregiving involvement in later generations. However, Asian and Hispanic counterparts showed mixed results. Third generation Asian and Hispanic caregivers used respite care the least and spent the most caregiving hours per week and had the longest caregiving duration compared to earlier generations. These caregiving patterns revealed underlying cultural values related to filial responsibility, even among later generations of caregivers of color. Findings suggest the importance of considering the cultural values of each racial/ethnic group regardless of generation when working with racially and ethnically diverse populations of family caregivers of older adults.

  2. Qualitative Perspectives from African American Youth and Caregivers for Developing the Families Improving Together (FIT) for Weight Loss Intervention.

    Science.gov (United States)

    Kitzman-Ulrich, Heather E; Wilson, Dawn K; Lyerly, Jordan E

    2016-09-01

    This study obtained qualitative data from African American (AA) youth and caregiver dyads to inform the Families Improving Together (FIT) for Weight Loss Trial. Focus groups were conducted with 55 AA parent and caregiver dyads to gather perspectives on facilitators and barriers, motivators, and program preferences for health and weight loss using a socio-ecological framework. Four main themes emerged: using a positive health promotion framework for weight loss programs, social support and the role of parents in providing positive support, using a socio-ecological approach to examine factors that contribute to weight, and creating programs that are convenient, fun, and reduce barriers to participation. The findings from this study were used to develop the FIT intervention and indicate important individual, interpersonal, and environmental factors to consider when developing weight management and healthy lifestyle programs for AA families.

  3. Psychological aspects of caregivers associated with family support in the therapeutic adherence of diabetic patients

    Directory of Open Access Journals (Sweden)

    Miriam Teresa Domínguez - Guedea

    2010-03-01

    Full Text Available Objective: To analyze the relationship of psychological aspects of family caregivers with the support that they offer to the diabetic patient’s adherence to treatment. The psychological aspects were: subjective well-being, attachment styles, coping strategies to problems and perceived social support. Methods: Joined in the study 29 family caregivers in a noneprobabilistic sample. Participants were contacted from three Mutual Aid Groups for diabetic and hypertensive patients in the city of Hermosillo, México. Questionnaires designed for the purposes of research were applied, as well as psychometric instruments previously validated in the cultural reference group. Results: The data showed that the psychological aspects that are statistically significant and negatively related to adherence therapy are avoidant attachment and negative affection, both associated to each other in a positive way, indicating that they occur in parallel. Avoidant attachment was positively associated with avoidant coping strategies and emotional disturbance, but negatively with secure attachment and material satisfaction. Negative affection were positively associated with emotional coping, but negatively with secure attachment and material satisfaction. Negative affect were positively associated with emotional confrontation, but negatively with positive affection, material satisfaction, emotional support and guidance support. Conclusions: More applied research in needed on the influence of family factors in achieving adherence to treatment, because so far, most work focuses more on the individual patient, disregarding the family factor.

  4. Development and preliminary evaluation of the Child Feeding Guide website and app: A tool to support caregivers with promoting healthy eating in children

    Directory of Open Access Journals (Sweden)

    Emma Haycraft

    2015-10-01

    Full Text Available Background: Fussy eating in young children is very common, with at least 50% of parents reporting having a fussy child. Eating behaviours established early in life tend to remain throughout childhood and into adulthood, so ensuring that children develop healthy eating behaviours from their earliest years is vital. Fussy children often refuse to eat healthy foods, like fruit and vegetables, but favour high-calorie foods instead. Diets low in fruit and vegetables have been linked to a number of preventable health conditions, such as diabetes and cancers, as well as to overweight and obesity. Fussy child eating behaviours can also cause anxiety and stress in caregivers, which can perpetuate the problem. Despite an abundance of available support for introducing complementary foods, practical advice about child feeding once weaning has occurred is lacking. Moreover, caregivers find available resources about feeding young children and promoting healthy eating to be “too basic” and have called for evidence-based, credible resources to help them manage children’s difficult or fussy eating behaviours. Empowering caregivers to effectively manage fussy eating behaviours and improve health in their children will likely prevent these eating behaviours from becoming engrained and reduce the number of children eating unhealthy or limited diets. Aim: To address the lack of child feeding support for caregivers by developing an evidence-based, credible and accessible support resource to promote healthy eating habits in young children and healthy feeding practices in caregivers. Method: Following a review of the literature and consultation with caregivers, the Child Feeding Guide was developed. The Child Feeding Guide is a website and free mobile app which offers information, advice and tools to help caregivers manage fussy eating behaviours. An online format was used to ensure the Child Feeding Guide is accessible and that a diverse range of caregivers can

  5. Willingness to express emotions to caregiving spouses.

    Science.gov (United States)

    Monin, Joan K; Martire, Lynn M; Schulz, Richard; Clark, Margaret S

    2009-02-01

    This study examined the association between care-recipients' willingness to express emotions to spousal caregivers and caregiver's well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients' willingness to express happiness was associated with less insensitive caregiver responding, and willingness to express interpersonal emotions (e.g., compassion, guilt) was associated with less caregiving stress. There were also gender differences, such that caregiving wives, in particular, benefited from their husband's willingness to express vulnerable (e.g., anxiety, sadness) and interpersonal emotions. (c) 2009 APA, all rights reserved

  6. Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress.

    NARCIS (Netherlands)

    Goossens, P.J.J.; Wijngaarden, B. van; Knoppert-van der Klein, E.A.M.; Achterberg, T. van

    2008-01-01

    AIMS: This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles. METHODS: Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers'

  7. Caregivers' perceived adequacy of support in end-stage lung disease: results of a population survey

    Directory of Open Access Journals (Sweden)

    Currow David C

    2011-11-01

    Full Text Available Abstract Background End-stage lung disease (ESLD is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses? Methods The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%. Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful. Results Of 1504 deaths reported, 145 (9.6% were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p physical care, information provision, and emotional and spiritual support. Conclusions Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided.

  8. Does Formal Employment Reduce Informal Caregiving?

    Science.gov (United States)

    He, Daifeng; McHenry, Peter

    2016-07-01

    Using the Survey of Income and Program Participation, we examine the impact of formal employment on informal caregiving. We instrument for individual work hours with state unemployment rates. We find that, among women of prime caregiving ages (40-64 years), working 10% more hours per week reduces the probability of providing informal care by about 2 percentage points. The effects are stronger for more time-intensive caregiving and if care recipients are household members. Our results imply that work-promoting policies have the unintended consequence of reducing informal caregiving in an aging society. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

  9. Randomized controlled trial of caregiver training for HIV-infected child neurodevelopment and caregiver well being.

    Science.gov (United States)

    Bass, Judith K; Opoka, Robert; Familiar, Itziar; Nakasujja, Noeline; Sikorskii, Alla; Awadu, Jorem; Givon, Deborah; Shohet, Cilly; Murray, Sarah M; Augustinavicius, Jura; Mendelson, Tamar; Boivin, Michael

    2017-08-24

    HIV infection places children at neurodevelopmental risk; for young children in poverty, risk is compounded by compromised caregiving quality. The mediational intervention for sensitizing caregivers (MISC) program trained caregivers on fostering daily interactions with young children. We hypothesized that MISC could enhance neurodevelopment of rural Ugandan HIV-infected children and improve mental health outcomes of their caregivers, which might mediate improved caregiving quality. A randomized trial of HIV-infected young children (ages 2-5 years) and their female caregivers; cluster randomization was to MISC or a nutrition curriculum. A total of 18 geographic clusters in rural Uganda. Children and caregivers were evaluated at baseline, 6 months, 1 year, and 1-year post-training. Mullen Scales of Early Learning, the Color-Object Association Test for memory, the Early Childhood Vigilance Test of attention, and the Behavior Rating Inventory of Executive Function for the children. Caregivers completed measures of depression and anxiety symptoms and daily functioning. MISC had a significant impact on postintervention receptive language (adjusted mean difference = 3.13, 95% confidence interval 0.08, 6.18) that persisted at 1-year follow-up. MISC caregivers reported significantly less functional impairment postprogram (adjusted mean difference = -0.15, 95% confidence interval -0.28, -0.01). Other outcomes were NS. Both intervention conditions resulted in improvements in the study children over time. MISC showed additional impacts on child language and caregiver well-being. Future directions that include assessing the extent enhanced language development resulting from improved caregiving may better prepare impoverished children for school.

  10. Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

    Science.gov (United States)

    Wong, Cindy C; Wallhagen, Margaret I

    2014-01-01

    To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (β = 0.46, p caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD. Copyright 2014, SLACK Incorporated.

  11. Concerns about aging and caregiving among middle-aged and older lesbian and gay adults.

    Science.gov (United States)

    Czaja, Sara J; Sabbag, Samir; Lee, Chin Chin; Schulz, Richard; Lang, Samantha; Vlahovic, Tatiana; Jaret, Adrienne; Thurston, Catherine

    2016-11-01

    Despite the increasing number of lesbian and gay older adults, research geared towards health and well-being of this population is limited. Many lesbian and gay seniors experience health disparities and are at risk for poor health outcomes. The aims of this study were to gather in-depth information on the concerns of lesbian and gay elders with respect to aging and care needs. The sample included 124 gay men and lesbian women aged 50+ years. Data were gathered via focus groups and questionnaires. The focus groups addressed: (1) concerns about aging in the LGBT community, (2) barriers to needed support and services, (3) concerns about caregiving and (4) needed programs for lesbian and gay seniors. Concerns expressed about aging included: lack of financial security, lack of family or social support, fears about the lack of someone to provide needed care, and discrimination in healthcare or service communities. Participants also indicated concerns about being alone and vulnerable and a need for resources and support programs, specifically for lesbian and gay older adults and for lesbian and gay caregivers. These findings suggest needed areas of support and programs for older gay men and lesbian women. They also suggest that healthcare professionals might need more training regarding the particular needs and concerns of this community.

  12. Teaching Family Caregivers to Assist Safely with Mobility.

    Science.gov (United States)

    Powell-Cope, Gail; Pippins, Karla M; Young, Heather M

    2017-12-01

    : This article is part of a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers aren't given the information they need to manage the complex care regimens of family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.The articles in this new installment of the series explain principles for promoting safe mobility that nurses should reinforce with family caregivers. Each article also includes an informational tear sheet-Information for Family Caregivers-that contains links to instructional videos. To use this series, nurses should read the article first, so they understand how best to help family caregivers, and then encourage the caregivers to watch the videos and ask questions. For additional information, see Resources for Nurses.

  13. Caregiver Stigma and Burden in Memory Disorders: An Evaluation of the Effects of Caregiver Type and Gender

    Directory of Open Access Journals (Sweden)

    Phoebe V. Kahn

    2016-01-01

    Full Text Available Despite considerable gains in public awareness of dementia, dementia patients and their caregivers continue to be stigmatized. Previous work has explored stigma and burden among adult children of persons with dementia in Israel, but no similar data exist for spousal caregivers or caregivers in general in the United States. This study examines the differences in stigma and burden experienced by spousal and adult child caregivers and male and female caregivers of persons with dementia. Eighty-two caregivers were given the Zarit Burden Inventory Short Form (ZBI and the Caregiver Section of the Family Stigma in Alzheimer’s Disease Scale (FS-ADS-C. Scores on the FS-ADS-C and ZBI were positively correlated (rs=.51, p<.001. Female caregivers reported experiencing more stigma on the FS-ADS-C (t(80 = −4.37, p<.001 and more burden on the ZBI (t(80 = −2.68, p=.009 compared to male caregivers, and adult child caregivers reported experiencing more stigma on the FS-ADS-C (t(30.8 = −2.22, p=.034 and more burden on the ZBI (t(80 = −2.65, p=.010 than spousal caregivers. These results reinforce the importance of support for caregivers, particularly adult child and female caregivers who may experience higher levels of stigma and burden.

  14. 77 FR 66525 - National Family Caregivers Month, 2012

    Science.gov (United States)

    2012-11-06

    ... National Family Caregivers Month, 2012 By the President of the United States of America A Proclamation Our... hours to providing care to their relatives or loved ones. During National Family Caregivers Month, we... veterans and their family caregivers through financial support; access to health insurance, mental health...

  15. What Behavioral and Psychological Symptoms of Dementia Affect Caregiver Burnout?

    Science.gov (United States)

    Hiyoshi-Taniguchi, Kazuko; Becker, Carl B; Kinoshita, Ayae

    2018-01-01

    Patients' irritability and aggression have been linked to caregiver depression, but the behaviors that most burden caregivers are not yet definitively identified. This study examines the connection between behavioral and psychological symptoms of dementia (BPSD) and the burnout of caregivers caring for home-dwelling elders with dementia symptoms in Japan. 80 Japanese rural and urban family caregivers completed detailed questionnaires about their experiences in caring for demented family members. We statistically analyzed the results for correlations between types of dementia, Pines Burnout, and Caregiver Distress. BPSD symptom severity significantly correlated with caregiver distress. The dementia symptoms most strongly correlated with caregiver burnout were: aggression, irritability, abnormal motor behavior, and hallucinations. Among the commonest symptoms, apathy, anxiety, and depression did not seriously aggravate caregiver burnout. Caregivers displayed higher burnout facing agitation/aggression, irritability, aberrant motor behavior, and hallucinations. Caregivers' reported distress was surprisingly dissimilar to their burnout scores; patients' delusions and anxiety led to higher distress reporting but not to burnout. Advance diagnosis of BPSD symptoms should be helpful to support nurses and caregivers of dementia patients. Particular support should be considered for caregivers and nurses of patients expressing aggression, irritability, abnormal motor behavior, and hallucination.

  16. “They laugh when I sing”: perceived effects of caregiver social ...

    African Journals Online (AJOL)

    Objective: Social support provided to caregivers of children has been shown to be protective for caregiver health, parenting and child psychosocial outcomes. However, little work in Southern Africa provides insight on the relationship between caregiver social support and child wellbeing. This report discusses exploratory ...

  17. Testing an Attribution Model of Caregiving in a Latino Sample: The Roles of Familismo and the Caregiver-Care Recipient Relationship.

    Science.gov (United States)

    Villalobos, Bianca T; Bridges, Ana J

    2016-07-01

    This study tests the parameters of Weiner's attribution model of caregiving, which describes how attributions of controllability relate to emotional reactions, which in turn influence willingness to provide support to stigmatized individuals. To date, the model has not been explored in the context of cultural variables, the caregiver-recipient relationship, or types of support. The present study examined the attribution model using a Latino community sample (N = 96) that was presented with vignettes describing an individual with depression. Support was found for the basic attribution model. Familismo was predictive of attributions of controllability and the basic model was predictive of emotional support, but not instrumental support. Participants were more willing to provide instrumental support to a partner, but had more positive affective reactions toward a sibling. The findings provide important information about contextual factors that may motivate Latino caregivers to provide support. © The Author(s) 2015.

  18. 78 FR 66617 - National Family Caregivers Month, 2013

    Science.gov (United States)

    2013-11-05

    ... National Family Caregivers Month, 2013 By the President of the United States of America A Proclamation... is one we must recognize and support. During National Family Caregivers Month, we thank these...' family caregivers also receive access to health care. Just as our loved ones celebrate with us in our...

  19. Treatment motivation among caregivers and adolescents with substance use disorders.

    Science.gov (United States)

    Cornelius, T; Earnshaw, V A; Menino, D; Bogart, L M; Levy, S

    2017-04-01

    Substance use disorders (SUDs) in adolescence have negative long-term health effects, which can be mitigated through successful treatment. Caregivers play a central role in adolescent treatment involvement; however, studies have not examined treatment motivation and pressures to enter treatment in caregiver/adolescent dyads. Research suggests that internally motivated treatment (in contrast to coerced treatment) tends to lead to better outcomes. We used Self-determination theory (SDT) to examine intersecting motivational narratives among caregivers and adolescents in SUD treatment. Relationships between motivation, interpretation of caregiver pressures, adolescent autonomy, and relatedness were also explored. Adolescents in SUD treatment and their caregivers (N Dyads =15) were interviewed about treatment experiences. Interviews were coded for treatment motivation, including extrinsic (e.g., motivated by punishment), introjected (e.g., motivated by guilt), and identified/integrated motivation (e.g., seeing a behavior as integral to the self). Internalization of treatment motivation, autonomy support/competence (e.g., caregiver support for adolescent decisions), and relatedness (e.g., acceptance and support) were also coded. Four dyadic categories were identified: agreement that treatment was motivated by the adolescent (intrinsic); agreement that treatment was motivated by the caregiver (extrinsic); agreement that treatment was motivated by both, or a shift towards adolescent control (mixed/transitional); and disagreement (adolescents and caregivers each claimed they motivated treatment; conflicting). Autonomy support and relatedness were most prominent in intrinsic dyads, and least prominent in extrinsic dyads. The mixed/transitional group was also high in autonomy support and relatedness. The extrinsic group characterized caregiver rules as an unwelcome mechanism for behavioral control; caregivers in the other groups saw rules as a way to build adolescent

  20. Combined life satisfaction of persons with stroke and their caregivers: associations with caregiver burden and the impact of stroke

    Directory of Open Access Journals (Sweden)

    von Koch Lena

    2011-01-01

    support the importance of a dyadic perspective and add to the understanding of the reciprocal influences between the caregiver and recipient. This knowledge has clinical implications and contributes to the identification of possible vulnerable dyads in need of tailored support.

  1. [The support system for dementia patient and their caregiver with Skype and webcam].

    Science.gov (United States)

    Hori, Miyako; Kubota, Masakazu; Kinoshita, Ayae

    2008-12-01

    The increase in the number of people suffering from dementia because of aging is a serious problem for caregivers since the feature of this pathology is irreversible and advancing. We designed an intervention study with Skype and webcam for patient with dementia being cared at home by their caregiver to prevent a further memory deterioration (seriousness of dementia) and to reduce a care burden as well. For a period of 12 weeks, a 4-patient-caregiver pair communicated with a hospital nurse through the computer for 30 minutes once a week. The patient and the caregiver worked as a pair. From the beginning of the intervention period, the intervention group and control group (n = 4) were assessed with cognitive scale, ADL scale, care burden scale and depression scale for the caregiver, and the like once in 4 weeks for 12 weeks. The initial report on the 8th week showed signs of improvement on the intervention group in HDS-R, also it improved the scale of moral of the caregiver as their scale of depression decreased.

  2. Burden in family caregivers of the elderly: prevalence and association with characteristics of the elderly and the caregivers

    Directory of Open Access Journals (Sweden)

    Lara de Sa Neves Loureiro

    2013-10-01

    Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.

  3. Family economic strengthening and mental health functioning of caregivers for AIDS-affected children in rural Uganda

    Science.gov (United States)

    Wang, Julia Shu-Huah; Ssewamala, Fred M.; Han, Chang-Keun

    2015-01-01

    In sub-Saharan Africa, many extended families assume the role of caregivers for children orphaned by AIDS (AIDS-affected children). The economic and psychological stress ensued from caregiving duties often predispose caregivers to poor mental health outcomes. Yet, very few studies exist on effective interventions to support these caregivers. Using data from a randomized controlled trial called Suubi-Maka (N = 346), this paper examines whether a family economic strengthening intervention among families caring for AIDS-affected children (ages 12–14) in Uganda would improve the primary caregivers’ mental health functioning. The Suubi-Maka study comprised of a control condition (n = 167) receiving usual care for AIDS-affected children, and a treatment condition (n = 179) receiving a family economic strengthening intervention, including matched savings accounts, and financial planning and management training to incentivize families to save money for education and/or family-level income generating projects. This paper uses data from baseline/pre-intervention (wave 1) interviews with caregivers and 12-month post-intervention initiation (wave 2). The caregiver’s mental health measure adapted from previous studies in sub- Saharan Africa had an internal consistency of .88 at wave 1 and .90 at wave 2. At baseline, the two study groups did not significantly differ on caregiver’s mental health functioning. However, at 12-month follow-up, multiple regression analysis located significant differences between the two study groups on mental health functioning. Specifically, following the intervention, caregivers in the treatment condition reported positive improvements on their mental health functioning, especially in the symptom areas of obsession–compulsion, interpersonal sensitivity, hostility, and psychoticism. Findings point to a need for programs and policies aimed at supporting caregivers of AIDS-affected children to begin to consider incorporating family

  4. Psychosocial experiences and needs of Australian caregivers of people with stroke: prognosis messages, caregiver resilience, and relationships.

    Science.gov (United States)

    El Masry, Yasmeen; Mullan, Barbara; Hackett, Maree

    2013-01-01

    Despite stroke being the most common form of cerebrovascular disease, there has been relatively little attention paid to the psychosocial experiences and needs of Australian caregivers of people who have had a stroke. Twenty Australian informal caregivers and 10 stroke survivors participated in individual semi-structured qualitative interviews covering all aspects of caregiving, including stroke survivors' views on their caregiver's experiences. The 5 interrelated topics most discussed were changes in relationships and support services, including being told to expect a poor outcome; caregiver attributes and coping strategies; stroke survivor limitations; external employment and financial stressors; and unexpected positive changes in relationships and priorities. Caring for a stroke survivor involves a complex interaction of these factors that appear to be moderated by the quality of the pre-existing stroke survivor-caregiver relationship and the poststroke coping strategies used. Particular attention should be paid to how prognosis is conveyed and whether appropriate outpatient services are available. Clinicians should also consider discussing appropriate caregiver coping strategies and the quality of the relationship between the stroke survivor and caregiver.

  5. Caregiver Coaching Strategies for Early Intervention Providers: Moving toward Operational Definitions

    Science.gov (United States)

    Friedman, Mollie; Woods, Juliann; Salisbury, Christine

    2012-01-01

    Early intervention (EI) providers increasingly coach and collaborate with caregivers to strengthen and support caregiver-child interactions. The EI providers learning to coach other adults benefit from knowing what, exactly, they should do to support caregivers. This article serves two purposes. First, it proposes an operationally defined,…

  6. Caregiver burden in amyotrophic lateral sclerosis : A systematic review

    NARCIS (Netherlands)

    de Wit, Jessica; Bakker, Leonhard A; van Groenestijn, Annerieke C; van den Berg, Leonard H; Schröder, Carin D; Visser-Meily, Johanna Ma; Beelen, Anita

    BACKGROUND: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. AIM: To evaluate the evidence on

  7. Feelings of burden among family caregivers of people with spinal cord injury in Turkey.

    Science.gov (United States)

    Secinti, E; Yavuz, H M; Selcuk, B

    2017-08-01

    The study was designed as a cross-sectional survey. The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Turkey. One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Caregiver burden was significantly related to caregivers' feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers' age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.

  8. Family support and intergenerational caregiving: report from the State of the Science in Aging with Developmental Disabilities Conference.

    Science.gov (United States)

    Heller, Tamar; Factor, Alan

    2008-07-01

    This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.

  9. PA26 Unmet needs and stress among caregivers of bedridden stroke patients in north kerala - a community based study.

    Science.gov (United States)

    Usha, K

    2015-04-01

    In developing countries informal care by an unpaid relative is the most prevalent form of long-term care. Being bedridden consumes the victim and the caregiver physically, psychologically, socially and financially. In developing countries, strengthening support for family caregivers is essential to sustain long term health care system. Therefore unmet needs and burdens of family caregivers, including inadequate training, respite, and access to support programs should be studied and addressed. To study unmet needs of caregivers of stroke patients in the home settings. To study physical, psychological and social stress of these caregivers. Descriptive Study setting: Four rural panchayats, where home based care is given to bed ridden patients by the palliative team of our medical college. Sampling design: Convenience sampling study population: Care givers of bedridden stroke patients tool: A semi structured questionnaire Forty caregivers participated in the study. Their mean age was 51 years. Most were wives (15, 37.5%) and daughters (14, 35%). All belonged to low socioeconomic class. Unmet needs were lack of recreation (67%), inadequate sleep (67%), total responsibility (65%), illnesses (53%) and insufficient money (67%). Severe to moderate physical, psychological and social stress was seen in 90%, 87.5% and 70% of caregivers respectively. Services to be aimed primarily at informal caregivers may be designed to increase the level of knowledge and emotional support of caregivers, provide respite, or provide financial benefits as social schemes. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  10. Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

    Science.gov (United States)

    Kate, N; Grover, S; Kulhara, P; Nehra, R

    2013-06-01

    OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

  11. Family Relationships and Psychosocial Dysfunction Among Family Caregivers of Patients With Advanced Cancer.

    Science.gov (United States)

    Nissen, Kathrine G; Trevino, Kelly; Lange, Theis; Prigerson, Holly G

    2016-12-01

    Caring for a family member with advanced cancer strains family caregivers. Classification of family types has been shown to identify patients at risk of poor psychosocial function. However, little is known about how family relationships affect caregiver psychosocial function. To investigate family types identified by a cluster analysis and to examine the reproducibility of cluster analyses. We also sought to examine the relationship between family types and caregivers' psychosocial function. Data from 622 caregivers of advanced cancer patients (part of the Coping with Cancer Study) were analyzed using Gaussian Mixture Modeling as the primary method to identify family types based on the Family Relationship Index questionnaire. We then examined the relationship between family type and caregiver quality of life (Medical Outcome Survey Short Form), social support (Interpersonal Support Evaluation List), and perceived caregiver burden (Caregiving Burden Scale). Three family types emerged: low-expressive, detached, and supportive. Analyses of variance with post hoc comparisons showed that caregivers of detached and low-expressive family types experienced lower levels of quality of life and perceived social support in comparison to supportive family types. The study identified supportive, low-expressive, and detached family types among caregivers of advanced cancer patients. The supportive family type was associated with the best outcomes and detached with the worst. These findings indicate that family function is related to psychosocial function of caregivers of advanced cancer patients. Therefore, paying attention to family support and family members' ability to share feelings and manage conflicts may serve as an important tool to improve psychosocial function in families affected by cancer. Copyright © 2016 American Academy of Hospice and Palliative Medicine. All rights reserved.

  12. Cross-cultural caregiving and the temporal dimension.

    Science.gov (United States)

    Escandon, Socorro

    2013-11-01

    The caregiving research literature has explored and documented findings from psychological, clinical, and policy/program perspectives, but little is known regarding the contextual perspectives of caregiving. Temporal factors influence the structure and functioning of the caregiving family. The proposed paradigm adaptation extends a contextual perspective that addresses the exploration of the caregiving process as a temporal, dynamic, progressive process over time, in which decisions made by caregivers may not always be based on observable tasks but, nevertheless, may have important consequences. When cultures cross, attitudes and behaviors are modified, resulting from contact with a different set of values and beliefs. Cross-cultural research aims to explore these changes that take place over time. Future research should consider the inclusion of measures that assess the temporal aspect of caregiving and the acculturation considerations of family caregivers. These measures are especially needed because of the increased influence of international migration, economic globalization, and political conflicts in today's multicultural societies.

  13. The Burden of Schizophrenia on Caregivers

    Directory of Open Access Journals (Sweden)

    Filiz Adana

    2011-06-01

    Full Text Available Caregivers’ burden in schizophrenia is a complex concept often with negative connotations. The concept refers to the impact of having a schizophrenia patient in the family including emotional, psychological, physical, economic distress and feelings of shame, embarrassment, guilt, and self-blame expe-rienced by the caregivers. There are objective and subjective aspects of care-givers’ burden. The objective burden refers to observed and verifiable impact of the diseased person in the family such as the patients disturbing behaviors, economic difficulties, and loss of income, restricted social activities, distressed household atmosphere, and undesirable influences on physical and mental health of the family members. The subjective burden refers to the extent of emotional distress caused by the objective burden. The data in the pertinent literature suggest an association between caregivers’ burden and sex, ethnicity, culture, caregivers’ health and quality of life, social support, and the symptomatology as presented by the patient. In order to promote mental health of schizophrenia patients along with their caregivers, the mental health workers should strive to find the means of supporting, informing, and cooperating with the family members. Psychosocial interventions designed for families and psychosocial rehabilitations programs designed for schizophrenia patients are effective means of easing caregivers’ burden.

  14. Aspects of family caregiving as addressed in planned discussions between nurses, patients with chronic diseases and family caregivers: a qualitative content analysis.

    Science.gov (United States)

    Hagedoorn, E I; Paans, W; Jaarsma, T; Keers, J C; van der Schans, C; Luttik, M Louise

    2017-01-01

    Caregiving by family members of elderly with chronic conditions is currently intensifying in the context of an aging population and health care reform in the Netherlands. It is essential that nurses have attention for supporting roles of family caregivers of older patients and address family caregiving aspects on behalf of the continuity of care. This study aims to explore what aspects of family caregiving were addressed during planned discussions between nurses, patients and family caregivers in the hospital. Qualitative descriptive research was conducted using non-participant observation and audio-recordings of planned discussions between nurses, older patients and their family caregivers as they took place in the hospital. Through purposive sampling eligible patients (≥ 65 years) with one or more chronic conditions were included. These patients were admitted to the hospital for diagnostics or due to consequences of their chronic illness. Retrospective chart review was done to obtain patient characteristics. Data were collected in November/December 2013 and April/May 2014 in four hospitals. Qualitative content analysis was performed using the inductive approach in order to gain insight into addressed aspects of family caregiving. A total of 62 patients (mean age (SD) 76 years (7.2), 52% male) were included in the study, resulting in 146 planned discussions (62 admission and discharge discussions and 22 family meetings). Three themes were identified regarding addressed aspects of family caregiving. Two themes referred to aspects addressing the patients' social network, and included 'social network structure' and 'social network support'. One theme referred to aspects addressing coordination of care issues involving family caregiving, referred to as 'coordination of care'. During discussions nurses mostly addressed practical information on the patients' social network structure. When specific family caregiving support was addressed, information was limited and

  15. Cancer Communication and Family Caregiver Quality of Life

    Directory of Open Access Journals (Sweden)

    Elaine Wittenberg

    2017-03-01

    Full Text Available Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.

  16. An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA

    Directory of Open Access Journals (Sweden)

    Deborah S. Boroughs

    2017-04-01

    Full Text Available Until 25 years ago, there were limited options for long-term mechanical ventilation of children, and the majority of children were cared for in hospitals. However, with improving technology, the pediatric intensive care unit has moved from the hospital to a home setting, as children with increasingly complex healthcare needs are now often cared for by family members. One of the most complex care conditions involves ventilator and tracheostomy support. Advanced respiratory technologies that augment natural respiratory function prolong the lives of children with respiratory compromise; however, this care often comes with serious risks, including respiratory muscle impairment, respiratory failure, and chronic pulmonary disease. Both non-invasive assisted ventilation and assisted ventilation via tracheostomy can prolong survival into adulthood in many cases; however, mechanical ventilation in the home is a high-stakes, high risk intervention. Increasing complexity of care over time requires perpetual skill training of family caregivers that is delivered and supported by professional caregivers; yet, opportunities for additional training outside of the hospital rarely exist. Recent data has confirmed that repetitive caregiver education is essential for retention of memory and skills in adult learners. This study analyzes the use of continued education and training in the community for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA.

  17. Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

    Science.gov (United States)

    Ejem, Deborah; Bauldry, Shawn; Bakitas, Marie; Drentea, Patricia

    2018-04-01

    Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.

  18. Resilience in caregivers of persons with Alzheimer's disease: A human condition to overcome caregiver vulnerability

    Directory of Open Access Journals (Sweden)

    Bernardino Fernández-Calvo

    Full Text Available Abstract In general, the experience of providing assistance to and dealing with the complications experienced by a person with Alzheimer's disease puts caregivers in a situation of high risk, vulnerability, and stress, causing serious physical and emotional problems. However, some caregivers adopt a resilient mindset, which helps them to experience and express positive feelings as well as lower their burden in relation to the care. This positive experience occurs because caregivers perceive the process of caring as less adverse. They face the situation of care with a more positive mindset and are able to resist and maintain adaptive functioning. The objective of the present narrative literature review was to emphasize the need to develop intervention programs for caregivers based on salutogenic models of resilience, resistance, and personal growth to promote positive individual, family, and community resources.

  19. Private prayer among Alzheimer's caregivers: mediating burden and resiliency.

    Science.gov (United States)

    Wilks, Scott E; Vonk, M Elizabeth

    2008-01-01

    This study examined whether the coping method of private prayer served as a protective factor of resiliency among a sample (N = 304) of Alzheimer's caregivers. Participants in caregiver support groups completed questionnaires that assessed a number of constructs, including caregiving burden; prayer frequency; use of private prayer as a means of coping; and perceived resiliency. The sample averaged a moderate level of burden and a great extent of prayer usage. Caregiving burden had positively affected the extent of prayer usage and negatively influenced perceived resiliency. Findings from hierarchical regression analysis showed that caregiving burden and private prayer significantly influenced variation in perceived resiliency scores. Results from a regression equation series and path analysis provided support for prayer as a mediator between burden and perceived resiliency. Implications for social work practice and education are discussed.

  20. Willingness to Express Emotions to Caregiving Spouses

    OpenAIRE

    Monin, Joan K.; Martire, Lynn M.; Schulz, Richard; Clark, Margaret S.

    2009-01-01

    This study examined the association between care-recipients’ willingness to express emotions to spousal caregivers and caregiver’s well-being and support behaviors. Using self-report measures in the context of a larger study, 262 care-recipients with osteoarthritis reported on their willingness to express emotions to caregivers, and caregivers reported on their stress and insensitive responding to care-recipients. Results revealed that care-recipients’ willingness to express happiness was ass...

  1. Conceptual challenges in the study of caregiver-care recipient relationships.

    Science.gov (United States)

    Lingler, Jennifer Hagerty; Sherwood, Paula R; Crighton, Margaret H; Song, Mi-Kyung; Happ, Mary Beth

    2008-01-01

    In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

  2. Mental Health in Rural Caregivers of Persons With Dementia

    Directory of Open Access Journals (Sweden)

    Alexandra J. Werntz

    2015-12-01

    Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.

  3. Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: a cross sectional study.

    Science.gov (United States)

    Akgul, Nur; Ozdemir, Leyla

    2014-08-01

    This study aimed to identify caregiver burden and influencing factors on the burden in primary caregivers of peripheral blood stem cell transplantation patients within 2-12 months following transplant, indicating early recovery period after discharge. This descriptive cross sectional study was carried out at hematopoietic stem cell transplantation outpatient units of three university hospitals in Turkey. A total of 55 patient and caregiver dyads were recruited and interviewed. The data were collected using questionnaires developed by the researchers and caregiver burden was measured with the Zarit Burden Interview. The mean score of Zarit Burden Interview was 28.41 (SD = 13.90). Patients' symptoms including nausea and self depreciation feeling were related to greater caregiver burden. Self-depreciation was referred to feeling undervalued. The mean score of the tool was significantly higher in caregivers who have not been educated beyond primary school and also caregivers who had lower income. Caregivers who supported their patients to fulfill physical needs and who did not receive help for meeting patients' psychological needs had statistically more elevated levels of burden. Moreover, the extent of care giving activities undertaken was positively correlated with caregiver burden scores. While positive impact of the care giving process on family relations decreased caregiver burden; negative effect increased the burden. This study suggests that caregiver burden of primary caregivers caring for peripheral blood stem cell transplantation patients varies by education, income status, and the extent of care giving activities undertaken. Changes in family ties and relations due to care giving effected caregiver burden. Copyright © 2014 Elsevier Ltd. All rights reserved.

  4. Culture, role conflict and caregiver stress: The lived experiences of family cancer caregivers in Nairobi.

    Science.gov (United States)

    Githaiga, Jennifer Nyawira

    2017-10-01

    This article explores the experiences of a small group of Nairobi women caring for a family cancer patient at home. On the basis of literature on women as caregivers in Africa, and on other literature more broadly, it was anticipated that issues around generational roles, gender and women's cultural role would be relevant. Seven women participated in semi-structured in-depth interviews, while thirteen women participated in four mini focus groups. Data were analysed using interpretative phenomenological analysis. Findings underscore the socio-cultural complexities of caregiving as a basis for evidence-based culturally appropriate structures to support family caregivers.

  5. Understanding Family Caregiver Communication to Provide Family-Centered Cancer Care.

    Science.gov (United States)

    Wittenberg, Elaine; Buller, Haley; Ferrell, Betty; Koczywas, Marianna; Borneman, Tami

    2017-12-01

    To describe a family caregiver communication typology and demonstrate identifiable communication challenges among four caregiver types: Manager, Carrier, Partner, and Lone. Case studies based on interviews with oncology family caregivers. Each caregiver type demonstrates unique communication challenges that can be identified. Recognition of a specific caregiver type will help nurses to adapt their own communication to provide tailored support. Family-centered cancer care requires attention to the communication challenges faced by family caregivers. Understanding the challenges among four family caregiver communication types will enable nurses to better address caregiver burden and family conflict. Copyright © 2017 Elsevier Inc. All rights reserved.

  6. Beyond using composite measures to analyze the effect of unmet supportive care needs on caregivers' anxiety and depression.

    Science.gov (United States)

    Lambert, Sylvie D; Hulbert-Williams, Nicholas; Belzile, Eric; Ciampi, Antonio; Girgis, Afaf

    2018-06-01

    Caregiver research has relied on composite measures (eg, count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers' anxiety and depression. Two hundred nineteen caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression Scale (minimal clinically important difference = 1.5) at 6 to 8 months and 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using partial least square regression, and those with a variance importance in projection >1 were analyzed using Bayesian model averaging. Across time, 8 items remained in the top 10 based on prevalence and were labelled "core." Three additional ones were labelled "frequent," as they remained in the top 10 from 1 year onwards. Bayesian model averaging identified a maximum of 3 significant unmet needs per time point-all leading to a difference greater than the minimal clinically important difference. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant. Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs. Copyright © 2018 John Wiley & Sons, Ltd.

  7. [Caregivers of people with neurodegenerative diseases: from help to delegation].

    Science.gov (United States)

    Delzescaux, Sabine; Blondel, Frédéric

    2015-01-01

    Being a caregiver is difficult, even more so when it comes to helping people with a neurodegenerative disease. These caregivers, either family members or close friends, are confronted with an unexpected delegation which can prove to be highly complex as the pitfalls can indeed be significant. Moreover, the support the caregivers can provide depends on the support they can get for themselves. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

  8. When LVAD Patients Die: The Caregiver's Mourning.

    Science.gov (United States)

    Rossi Ferrario, Silvia; Omarini, Pierangela; Cerutti, Paola; Balestroni, Giangluigi; Omarini, Giovanna; Pistono, Massimo

    2016-05-01

    Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning. Copyright © 2015 International Center for Artificial Organs and Transplantation and Wiley Periodicals, Inc.

  9. Testing Self-Efficacy as a Pathway that Supports Self-Care among Family Caregivers in a Psychoeducational Intervention

    Science.gov (United States)

    Savundranayagam, Marie Y.; Brintnall-Peterson, Mary

    2010-01-01

    This study investigated the extent to which a psychoeducational intervention supports family-centered care by influencing health risk and self-care behaviors of caregivers of individuals with Alzheimer's disease (N = 325). Moreover, this study investigated the extent to which changes in self-efficacy explained changes in health risk and self-care…

  10. Caregiving process and caregiver burden: Conceptual models to guide research and practice

    Directory of Open Access Journals (Sweden)

    Brehaut Jamie

    2004-01-01

    Full Text Available Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

  11. Caregiving process and caregiver burden: Conceptual models to guide research and practice

    Science.gov (United States)

    Raina, Parminder; O'Donnell, Maureen; Schwellnus, Heidi; Rosenbaum, Peter; King, Gillian; Brehaut, Jamie; Russell, Dianne; Swinton, Marilyn; King, Susanne; Wong, Micheline; Walter, Stephen D; Wood, Ellen

    2004-01-01

    Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area. PMID:14723791

  12. Home discharge of technology-dependent children: evaluation of a respiratory-therapist driven family education program.

    Science.gov (United States)

    Tearl, Donna K; Hertzog, James H

    2007-02-01

    Initial hospital discharge to home of technology-dependent children requires extensive training and education of the family caregivers. Education of adult family members should promote positive interactions in a nonthreatening manner while facilitating the development of the knowledge and skills to competently and independently provide all aspects of the medical care. We utilize a training program for adult family members of children who have undergone tracheostomy to facilitate long-term mechanical ventilatory support and who are being prepared for their initial discharge from the hospital to home. A dedicated respiratory therapist family educator directs this program. Multiple teaching tools, activities, and training sessions, based on adult learning theory, are utilized to develop appropriate clinical skills to manage children with tracheostomies and the associated technological supports. We evaluated the effectiveness of our program by administering a written test to caregivers, at the start and the conclusion of their training. We also surveyed the caregivers about their satisfaction with the educational program and the respiratory therapist family educator's performance. We also surveyed employees of the durable medical equipment companies used by the families, regarding the caregivers' knowledge and competency in the home one month following discharge. Our program was associated with a statistically significant improvement in caregiver test performance, and the caregivers expressed a high degree of satisfaction with the program. The employees of the durable medical equipment companies perceived a high degree of knowledge and competence on the part of the home caregivers. Our training program appears to have a positive impact on the educational preparation of caregivers.

  13. "Mad or bad?": burden on caregivers of patients with personality disorders.

    Science.gov (United States)

    Bauer, Rita; Döring, Antje; Schmidt, Tanja; Spießl, Hermann

    2012-12-01

    The burden on caregivers of patients with personality disorders is often greatly underestimated or completely disregarded. Possibilities for caregiver support have rarely been assessed. Thirty interviews were conducted with caregivers of such patients to assess illness-related burden. Responses were analyzed with a mixed method of qualitative and quantitative analysis in a sequential design. Patient and caregiver data, including sociodemographic and disease-related variables, were evaluated with regression analysis and regression trees. Caregiver statements (n = 404) were summarized into 44 global statements. The most frequent global statements were worries about the burden on other family members (70.0%), poor cooperation with clinical centers and other institutions (60.0%), financial burden (56.7%), worry about the patient's future (53.3%), and dissatisfaction with the patient's treatment and rehabilitation (53.3%). Linear regression and regression tree analysis identified predictors for more burdened caregivers. Caregivers of patients with personality disorders experience a variety of burdens, some disorder specific. Yet these caregivers often receive little attention or support.

  14. Teaching Caregivers to Administer Eye Drops, Transdermal Patches, and Suppositories.

    Science.gov (United States)

    Lindauer, Allison; Sexson, Kathryn; Harvath, Theresa A

    2017-05-01

    : This article is the third in a series, Supporting Family Caregivers: No Longer Home Alone, published in collaboration with the AARP Public Policy Institute. Results of focus groups conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project supported evidence that family caregivers aren't being given the information they need to manage the complex care regimens of their family members. This series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's medications. Each article explains the principles nurses should consider and reinforce with caregivers and is accompanied by a video for the caregiver to watch. The third video can be accessed at http://links.lww.com/AJN/A76.

  15. A study on caregiver burden: stressors, challenges, and possible solutions.

    Science.gov (United States)

    Bialon, Laura Nelson; Coke, Sallie

    2012-05-01

    The purpose of this qualitative study was to explore factors impacting caregiver burden and to explore possible solutions for family caregivers of terminally ill patients. The majority of caregivers reported experiencing role conflict and inadequate stress management. Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from Hospice agencies, more education on caregiver training, and more public education about Hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver.

  16. A Group Therapeutic Songwriting Intervention for Family Caregivers of People Living With Dementia: A Feasibility Study With Thematic Analysis.

    Science.gov (United States)

    Baker, Felicity A; Stretton-Smith, Phoebe; Clark, Imogen N; Tamplin, Jeanette; Lee, Young-Eun C

    2018-01-01

    This study aimed to test the feasibility of implementing a group songwriting program with family caregivers (FCGs) of people living with dementia. Fourteen FCGs consented to participate in either the songwriting group ( n = 8) or control condition ( n = 6). Participants completed baseline and 7-week measures of depression (PHQ-9), perceptions of their caregiving experience (PACQ), and perceptions of their relationship with the care recipient (QCPR). A six-session group songwriting program was implemented across two sites, focusing on participants co-creating a song about their caregiving experiences. Participation and retention rates were high suggesting the intervention was acceptable. An observed pre-post effect size for the PHQ-9 in the experimental group ( d = 0.64) and control group ( d = -0.33) suggests the measure is sensitive to change over a short period of time in this population and has the potential to detect significant change in a larger controlled trial. Qualitative analysis of focus group interviews suggested the songwriting process allowed participants to share their entire caregiver journey with others, differentiating the intervention from standard carer support groups. Participants described group songwriting as enabling them to find connections with other caregivers, create a group identity, and gain insight into their carer journey, subsequently leading to the development of inner strength and personal growth. Qualitative findings suggest coping may be a more relevant construct to measure than caregiver-patient relationship quality or caregivers' perception of caregiving.

  17. Family caregiver communication in oncology: advancing a typology.

    Science.gov (United States)

    Goldsmith, Joy; Wittenberg, Elaine; Platt, Christine Small; Iannarino, Nicholas T; Reno, Jenna

    2016-04-01

    The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type. Copyright © 2015 John Wiley & Sons, Ltd.

  18. Caregivers' burden in patients with COPD.

    Science.gov (United States)

    Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro

    2015-01-01

    Chronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD. We used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions. A total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients. The results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions.

  19. Influence of home care services on caregivers' burden and satisfaction.

    Science.gov (United States)

    Kim, Eun-Young; Yeom, Hyun-E

    2016-06-01

    To examine the factors affecting the burden and satisfaction of family caregivers, focusing on the beneficial impacts of home care service use. Long-term care for older patients is a multifaceted process that brings both burden and satisfaction to family caregivers. It is expected that home care services offered by the Korean long-term care insurance may contribute to decreasing the burden of family caregivers and enhancing their satisfaction by assisting with practical caregiving tasks. A cross-sectional study. A convenience sample of 157 family caregivers was recruited from five home care service agencies in South Korea. Information about the caregivers, caregiving history, older care recipients and use of home care services was assessed. The effects of home care service use on caregiving burden and satisfaction were tested using hierarchical multiple regression analyses after adjusting for the characteristics of the caregivers, caregiving history and older care recipients. There was no significant influence of home care service use on reducing caregiving burden or on increasing caregivers' satisfaction. Although several factors were associated with caregiving burden and satisfaction, family functioning was the most unique factor to significantly affect both caregiving burden and satisfaction. Home care services might not automatically have a positive impact on caregivers' burden and satisfaction, but maintaining healthy family functioning is an important issue for family caregivers. The findings highlight the important need to reconsider ways to provide home care services and to develop nursing interventions to reinforce supportive family functioning. Practical strategies for providing home care services should be developed through a concrete assessment of the family dynamics and the needs of family caregivers. Health professionals should play a pivotal role in performing the assessment and in developing interventions to strengthen supportive family functioning

  20. Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality

    Directory of Open Access Journals (Sweden)

    Amy Waller

    2017-11-01

    Full Text Available Abstract Background To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. Methods Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 – Dec 2016. Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer; then assessed against the Effective Practice and Organisation of Care (EPOC methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed. Results The number of publications increased by 13% each year (p < 0.001. Half were descriptive studies (n = 92, 50% describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48% reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10, multiple modalities (n = 9 or telephone (n = 15. Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time. Conclusion Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.

  1. Quantifying the burden of informal caregiving for patients with cancer in Europe.

    Science.gov (United States)

    Goren, Amir; Gilloteau, Isabelle; Lees, Michael; DaCosta Dibonaventura, Marco

    2014-06-01

    Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe. Caregivers (n = 1,713) for patients with cancer and non-caregivers (n = 103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index). Caregivers for patients with cancer vs. non-caregivers reported significant (P status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety). Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.

  2. South Korean Family Caregiver Involvement in Delirium Care: A Qualitative Descriptive Study.

    Science.gov (United States)

    Kang, Yun; Moyle, Wendy; Cooke, Marie; O'Dwyer, Siobhan

    2017-12-01

    The current study aimed to describe the effect of an educational program on RN-initiated efforts to involve family caregivers in delirium care. A descriptive qualitative study was performed. A purposive sample of 12 RNs who participated in a one group, pre-post evaluation of a delirium educational program, and a nominated sample of six family caregivers of patients who had been cared for by RNs in the program participated in individual, in-depth interviews. The qualitative findings indicated that the inclusion of a delirium brochure in ward orientation on admission, with reinforcement during shift changes, and RN-initiated engagement with family caregivers promoted family caregiver involvement in delirium prevention. Further studies in South Korea are needed to determine which family-centered nursing care interventions are culturally appropriate and most effective for RNs and family caregivers in delirium care. [Journal of Gerontological Nursing, 43(12), 44-51.]. Copyright 2017, SLACK Incorporated.

  3. Caregiver experiences and perceptions of stroke | Thomas | Health ...

    African Journals Online (AJOL)

    Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available.

  4. [Reducing the Care-Related Burdens of a Family Caregiver of a Person With Mild Cognitive Impairment: A Home-Based Case Management Program].

    Science.gov (United States)

    Chen, Min-Chia; Chiu, Yi-Chen; Wei, Pi-Mei; Hsu, Wen-Chuin

    2017-06-01

    The long-term care of cognitively impaired patients with concomitant behavioral problems brings great stress and burdens to family caregivers. The present article describes a family caregiver with multiple chronic diseases who concurrently shouldered primary care responsibilities for her husband, a patient with mild cognitive impairment, problematic behaviors, and medication non-adherence issues. The period of care was between September 23rd and December 29th, 2015. Data on physiological, psychological, and social burdens were collected based on a stress process model for family caregiving. We then applied a home-based, individually tailored intervention, which included nursing education, skills training, listening/counseling, and resource connecting, that effectively helped the family caregiver reduce her burdens. Our assessment identified nursing-care-related problems as the primary source of caregiver burden in this case, with identified stressors including a lack of knowledge regarding patient care, medication management problems, sleep disorders, and inadequate social resources. Using continuous care interactions, we established a trust relationship with the family caregiver, prioritized her needs, and provided dementia care knowledge and skills, which gradually improved her caregiving competence. Our instruction included increasing caregiver understanding of the disease course of dementia, related problematic behaviors, and medication management. Our intervention enhanced the disease awareness of the caregiver and helped her become more positive about her caregiving tasks. Therefore, the negative impacts on her family were reduced. Social support and long-term care resources further reduced her burden and improved her quality of life.

  5. Caring for frail elders with musculoskeletal conditions and family caregivers' subjective well-being: The role of multidimensional caregiver burden.

    Science.gov (United States)

    Lu, Nan; Liu, Jinyu; Lou, Vivian W Q

    2015-01-01

    The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

  6. Self-management support and eHealth for patients and informal caregivers confronted with advanced cancer : An online focus group study among nurses

    NARCIS (Netherlands)

    Slev, Vina N.; Pasman, H. Roeline W.; Eeltink, Corien M.; Van Uden-Kraan, Cornelia F.; Verdonck-De Leeuw, Irma M.; Francke, Anneke L.

    2017-01-01

    Background: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and

  7. The effectiveness of dyadic interventions for people with dementia and their caregivers.

    Science.gov (United States)

    Moon, Heehyul; Adams, Kathryn Betts

    2013-11-01

    The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners' well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.

  8. Gratitude and coping among familial caregivers of persons with dementia.

    Science.gov (United States)

    Lau, Bobo Hi-Po; Cheng, Cecilia

    2017-04-01

    Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40-76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.

  9. The relationship between caregiving self-efficacy and depressive symptoms in family caregivers of patients with Alzheimer disease: a longitudinal study.

    Science.gov (United States)

    Grano, Caterina; Lucidi, Fabio; Violani, Cristiano

    2017-07-01

    Caregiving for a relative with dementia has been associated with negative consequences for mental health. Self-efficacy has been shown to correlate negatively with depression but the long-term association between caregiver burden, caregiver self-efficacy, and depressive symptoms, remains still largely unexplored. The aim of the present study was to evaluate whether different self-efficacy domains partially mediated the relationship between caregiving burden and depression. A three-wave design was used, with initial assessment and follow-ups three months later and one year later. One hundred seventy caregivers of patients with AD responded to measures of caregiver burden, caregiving self-efficacy, and depressive symptoms. Data were analyzed by means of structural equation models. The tested model provided support for the guiding hypothesis. Burden at the time of the first assessment (T1) significantly influenced depression one year later and the relationship between burden at time one and depressive symptoms one year later was partially mediated by self-efficacy for controlling upsetting thoughts. The findings of the present study provide evidence that, along a considerable length of time, the effects of caregiver burden on depressive symptoms can be explained by the caregivers' efficacy beliefs in controlling upsetting thoughts related to the caregiving tasks. Interventions for caregivers of patients with AD may help them in tackling negative thoughts about the caregiving role.

  10. Experiences and challenges of informal caregiving for Korean immigrants.

    Science.gov (United States)

    Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T; Lee, Jong Eun; Kim, Kim B

    2008-09-01

    This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers' unique caregiving experiences from their perspectives. A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 (1/2)-2 hours. Thematic analysis was conducted by two bilingual researchers. Three key themes were identified: the caregiver role - competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population.

  11. Psychological Distress Among Caregivers of Individuals With a Diagnosis of Schizophrenia or Schizoaffective Disorder.

    Science.gov (United States)

    Lerner, Debra; Chang, Hong; Rogers, William H; Benson, Carmela; Lyson, Mercedes C; Dixon, Lisa B

    2018-02-01

    The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates. From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs). Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only. Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.

  12. Effectiveness of a Caregiver Education Program on Providing Oral Care to Individuals with Intellectual and Developmental Disabilities

    Science.gov (United States)

    Fickert, Nancy A.; Ross, Diana

    2012-01-01

    Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to…

  13. Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease

    Directory of Open Access Journals (Sweden)

    Iavarone A

    2014-07-01

    Full Text Available Alessandro Iavarone,1,2 Antonio Rosario Ziello,3,4 Francesca Pastore,3 Angiola Maria Fasanaro,3 Carla Poderico5 1Neurological and Stroke Unit, CTO Hospital, 2Italian Association on Alzheimer's Disease (AIMA, 3Memory Clinic, Neurological Unit, AORN Cardarelli Hospital, Naples, Italy; 4Clinical Research, Telemedicine and Telepharmacy Centre, University of Camerino, Camerino, Italy; 5Department of Psychology, Second University of Naples, Caserta, Italy Background: Alzheimer’s disease (AD causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods: Eighty-six caregivers received the Caregiver Burden Inventory (CBI and the ­State-Trait Anxiety Inventory (STAI Y-1 and Y-2. The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS, according to the model proposed by Endler and Parker in 1990.Results: The CBI scores (overall and single sections were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2 correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion: AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored

  14. Perceptions of the care received from Australian palliative care services: A caregiver perspective.

    Science.gov (United States)

    Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy

    2018-04-01

    ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the

  15. Apoio social na experiência do familiar cuidador Social support in the family caregiver experience

    Directory of Open Access Journals (Sweden)

    Ana Karina Monte Cunha Marques

    2011-01-01

    Full Text Available Estudo qualitativo, do tipo descritivo, objetivando conhecer a experiência de cuidar de pessoas doentes no contexto dos lares, analisando as implicações do apoio social na saúde física e emocional do familiar cuidador. Os dados foram coletados por meio da entrevista semi-estruturada junto a dezoito familiares cuidadores de pessoas com doenças crônicas. A técnica do discurso do sujeito coletivo foi utilizada para a organização dos dados. Constatou-se que todos os informantes eram do sexo feminino, com idade média de cinquenta anos, possuiam até o nível médio de escolaridade, cuidavam ininterruptamente de pessoa doente, predominando as mães com sequela de acidente vascular cerebral. Relatavam comprometimento da sua saúde relacionado ao cuidado realizado: dor na coluna, hipertensão, enxaqueca e depressão. Os discursos coletivos são sugestivos da quebra das redes sociais e da escassez de apoio, levando a pessoa a rejeitar a condição de cuidador. A sobrecarga ficou caracterizada pelo familiar cuidador perceber-se diante de inúmeras situações de enfrentamento, muitas das quais não conseguia administrar.This is a qualitative and descriptive study aiming to know the experience of taking care of sick people in the context of homes, analyzing the implications of the social support in the physical and emotional health of the family caregiver. The data had been collected by means of the semi-structured interview with 18 family caregivers of people with chronic illnesses. The technique of the Collective subject discourse was used for the organization of the data. One evidenced that all the informers were of the feminine sex, with average age of 50 years and medium instructional level. They took care uninterruptedly of sick people predominating the mothers with sequel of stroke. They reported health complications related to the care carried through: back pain, hypertension, migraine and depression. The collective speeches are

  16. Caring for caregivers of people living with HIV in the family: a response to the HIV pandemic from two urban slum communities in Pune, India.

    Science.gov (United States)

    Kohli, Rewa; Purohit, Vidula; Karve, Latika; Bhalerao, Vinod; Karvande, Shilpa; Rangan, Sheela; Reddy, Srikanth; Paranjape, Ramesh; Sahay, Seema

    2012-01-01

    In low resource settings, the vast majority of 'Person/people Living with HIV' (PLHIV/s) and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India. A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs) among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs) with PLHIVs (20) and their caregivers (24), were conducted using separate guides respectively. Data was analyzed thematically. Home based care was perceived as economically viable option available for PLHIVs. 'Care' comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training. Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.

  17. Caring for caregivers of people living with HIV in the family: a response to the HIV pandemic from two urban slum communities in Pune, India.

    Directory of Open Access Journals (Sweden)

    Rewa Kohli

    Full Text Available INTRODUCTION: In low resource settings, the vast majority of 'Person/people Living with HIV' (PLHIV/s and inadequate healthcare delivery systems to meet their treatment and care needs, caregivers play a vital role. Home based caregivers are often unrecognized with limited AIDS policies and programs focusing on them. We explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India. METHODOLOGY: A community based qualitative study to understand the issues pertaining to home based care for PLHIV was conducted in urban settings of Pune city, in Maharashtra, India. Eight Focus Group Discussions (FGDs among men, women and peer educators were carried out. A total of 44 in-depth Interviews (IDIs with PLHIVs (20 and their caregivers (24, were conducted using separate guides respectively. Data was analyzed thematically. RESULTS: Home based care was perceived as economically viable option available for PLHIVs. 'Care' comprised of emotional, adherence, nursing and financial support to PLHIV. Home based care was preferred over hospital based care as it ensured confidentiality and patient care without hampering routine work at home. Women emerged as more vital primary caregivers compared to men. Home based care for men was almost unconditional while women had no such support. The natal family of women also abandoned. Their marital families seemed to provide support. Caregivers voiced the need for respite care and training. DISCUSSION: Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their

  18. Caregiver psychoeducation for first-episode psychosis.

    LENUS (Irish Health Repository)

    McWilliams, Stephen

    2010-01-01

    International best-practice guidelines for the management of first-episode psychosis have recommended the provision of psychoeducation for multifamily groups. While there is ample evidence of their efficacy in multiepisode psychosis, there is a paucity of evidence supporting this approach specifically for first-episode psychosis. We sought to determine whether a six-week caregiver psychoeducation programme geared specifically at first-episode psychosis improves caregiver knowledge and attitudes.

  19. Multi-Language Programs. Beginnings Workshop.

    Science.gov (United States)

    D'Onofrio-Papadaki, Evienia; Matsalia, Joan; Bowie, Paula; Wardle, Francis; Bruno, Holly Elissa

    2003-01-01

    Presents five articles on multi-language programs in early childhood education: "Bilingualism/Multilingualism and Language Acquisition Theories" (Evienia Papadaki-D'Onofrio); "Training and Supporting Caregivers Who Speak a Language Different from Those in Their Community" (Joan Matsalia and Paula Bowie); "Language Immersion Programs for Young…

  20. Depression in Main Caregivers of Dementia Patients: Prevalence and Predictors

    Directory of Open Access Journals (Sweden)

    Victoria Omranifard

    2018-01-01

    Full Text Available Background: The most common neurodegenerative disease is dementia. Family of dementia patients says that their lives have been changed extensively after happening of dementia to their patients. One of the problems of family and caregivers is depression of the caregiver. In this study, we aimed to find the prevalence of depression and factors can affect depression in the dementia caregivers. Materials and Methods: This study was cross-sectional study with convenient sampling method. Our society was 96 main caregivers of dementia patients in the year 2015 in Iran. We had two questionnaires, a demographic and Beck Depression Inventory (BDI. BDI Cronbach's alpha is 0.86 for psychiatric patients and 0.81 for nonpsychiatric persons, and Beck's scores are between 0 and 64. We used SPSS version 22 for statistical analysis. Results: According to Beck depression test, 69.8% (n = 67 out of 96 of all caregivers had scores in the range of depression. In bivariate analysis, we found higher dementia severity and lower support of other family members from the caregiver can predict higher depression in the caregiver. As well, in regression analysis using GLM model, we found higher age and lower educational level of the caregiver can predict higher depression in the caregiver. Moreover, regression analysis approved findings about severity and support of other family members in bivariate analysis. Conclusion: High-level depression is found in caregivers of dementia patients. It needs special attention from healthcare managers, clinicians and all of health-care personnel who deals with dementia patients and their caregivers.

  1. 38 CFR 52.71 - Participant and family caregiver responsibilities.

    Science.gov (United States)

    2010-07-01

    ....71 Participant and family caregiver responsibilities. The program management has a written statement of participant and family caregiver responsibilities that are posted in the facility and provided to... 38 Pensions, Bonuses, and Veterans' Relief 2 2010-07-01 2010-07-01 false Participant and family...

  2. Experiences and challenges of informal caregiving for Korean immigrants

    Science.gov (United States)

    Han, Hae-Ra; Choi, Yun Jung; Kim, Miyong T.; Lee, Jong Eun; Kim, Kim B.

    2010-01-01

    Aim This paper is a report of a study designed to explore the caregiving experiences of Korean Americans. Background Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers’ unique caregiving experiences from their perspectives. Method A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 ½-2 hours. Thematic analysis was conducted by two bilingual researchers. Findings Three key themes were identified: the caregiver role – competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety (Hyo); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems. Conclusion The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population. PMID:18727754

  3. Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

    OpenAIRE

    Phillips, Sara S.; Ragas, Daiva M.; Hajjar, Nadia; Tom, Laura S.; Dong, XinQi; Simon, Melissa A.

    2016-01-01

    Our primary objective was to gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in re-entering the job market, offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, we explored whether training informal caregivers might help them transition into a paid caregiving or other health-service role. We interviewed 55...

  4. Self-stigma among caregivers of people with mental illness: toward caregivers’ empowerment

    Science.gov (United States)

    Girma, Eshetu; Möller-Leimkühler, Anne Maria; Dehning, Sandra; Mueller, Norbert; Tesfaye, Markos; Froeschl, Guenter

    2014-01-01

    Background In addition to economic and material burdens, caregivers of people with mental illness are exposed to psychosocial challenges. Self-stigma is among the psychological challenges that can be exacerbated by intrinsic and/or extrinsic factors. Caregivers’ self-stigma can negatively influence the patients’ treatment and rehabilitation process. The objective of this study was to measure the level and correlates of self-stigma among caregivers of people with mental illness. Methods An interviewer-administered cross-sectional study was conducted in the Jimma University Specialized Hospital Psychiatry Clinic in Ethiopia on a sample of 422 caregivers. Data were collected by trained nurses working in the clinic using a pretested questionnaire. Multivariate linear regression was performed to identify the correlates of self-stigma among caregivers of people with mental illness. Results The majority (70.38%) of the caregivers were male. On a scale of 0 to 15, with 0 being low and 15 being high, the average self-stigmatizing attitude score was 4.68 (±4.11). A statistically significant difference in mean self-stigma score was found between urban and rural respondents (t=3.95, PSelf-stigma of caregivers showed significant positive correlation with perceived signs of mental illness (r=0.18, Pself-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, Pself-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers’ self-stigma may negatively influence patients’ treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness. PMID:24470760

  5. Social media monitoring of asthmatic children treated in a specialized program: Parents and caregivers expectations

    Directory of Open Access Journals (Sweden)

    Marilyn Urrutia-Pereira

    2015-11-01

    Conclusion: Parents or caregivers of children attending the PIPA program expressed high interest in using social media. However, few use it to control their children’s disease. While providing a great benefit to use social media as a mean of communication in health, the content needs to be monitored for reliability and quality. The privacy of users (doctors and patients must be preserved and it is very important to facilitate the access to Internet.

  6. Psychometric evaluation of the shortened resilience scale among Alzheimer's caregivers.

    Science.gov (United States)

    Wilks, Scott E

    2008-01-01

    The purpose of this study was to evaluate psychometric properties of the shortened Resilience Scale (15-item version RS15) among a sample of Alzheimer's caregivers. Self-reported data were collected from 229 participants at 2 Alzheimer's caregiver conferences. RS15 principal axis factoring indicated a single-dimensional solution with all items loaded. Reliability was strong. Convergent validity for the RS15 was suggested through its correlations with stress, family support, and friend support. Odds ratios showed significant likelihoods of high resilience given low stress and high social support. The results confirmed the RS15 to be a psychometrically sound measure that can be used to appraise the efficacy of adaptability among Alzheimer's caregivers.

  7. Otitis Media and Caregiver Quality of Life

    DEFF Research Database (Denmark)

    Heidemann, Christian Hamilton; Godballe, Christian; Kjeldsen, Anette Drøhse

    2014-01-01

    OBJECTIVE: Otitis media in children may have a considerable impact on caregiver quality of life. The disease-specific Caregiver Impact Questionnaire is designed to assess caregiver quality of life in relation to child otitis media. Assessment of the psychometric properties of this instrument...... is limited. This study assesses the psychometric properties of this instrument including validity, reproducibility, responsiveness, and interpretability. STUDY DESIGN: Longitudinal validation study. SETTING: Secondary care units. METHODS: Analyses were based on data from 435 families. Validity was assessed...... Danish version of the Caregiver Impact Questionnaire is a valid and reproducible measurement tool that is also sensitive to measuring change in the current setting. A change score representing minimal important change as perceived by the respondent is proposed. Results of this study support the use...

  8. Factors Concerning Veterans With Dementia, Their Caregivers, and Coordination of Care: A Systematic Literature Review.

    Science.gov (United States)

    Mileski, Michael; Scott Kruse, Clemens; Brooks, Matthew; Haynes, Christine; Collingwood, Ying; Rodriguez, Rachel

    2017-11-01

    Military veterans diagnosed with dementia compose a large portion of our population. Often ignored are their caregivers and their plight as well as the availability, quality, and accessibility of health care for this demographic. The purpose of this systematic literature review is three fold: to identify opportunities available to increase public awareness on the subject; to identify areas of improvement in the level of care and quality of life for our nation's veterans; and to identify if adequate resources are available to veterans with dementia and their caregivers. The authors conducted systematic searches of three databases: PubMed via The National Center for Biotechnology Information, the Cumulative Index of Nursing and Allied Health Literature (CINAHL) Complete via Ebson B. Stephens Company (EBSCO Host), and Google. Data were collected regarding providing care to veterans who are suffering from dementia or Alzheimer's disease and their caregivers between 2008 and June 2016. Search results were filtered by date range, full text, English language, Boolean operators, and academic journals (n = 14). The review confirmed there are many facilitators and barriers in the coordination of care offered to veterans with dementia. Facilitators of quality care include veteran's expectations, family support, program development, and the availability of services. These positive aspects are aided by several community-based support services, new technology, and preventative care. Barriers are caregiver expectations, coordination of care, providers, and informal and formal costs. These negative facets are due to lack of educational resources, an increased veteran population diagnosed with dementia, limited knowledge of resources, and limited medical service in rural areas. Overall, there are a number of community programs that want to, and can, help veterans with dementia. There are also a number of ways to help veterans with dementia cope with their issues, which include

  9. Psychological well-being of parents and family caregivers of children with hearing impairment in south India: influence of behavioural problems in children and social support.

    Science.gov (United States)

    van Driessche, Anne; Jotheeswaran, A T; Murthy, G V S; Pilot, Eva; Sagar, Jayanthi; Pant, Hira; Singh, Vivek; Dpk, Babu

    2014-08-01

    Parents of children with hearing impairment are at increased risk of mental health morbidities. We examined the predictive factors associated with caregiver's strain and psychological morbidities in parents and family caregivers of children with hearing impairment. In total, n = 201 parents and family caregivers of children with and without hearing impairment aged 3 to 16 years were recruited. Caregiver's strain and psychological morbidities were measured using the Zarit Burden scale and the World Health Organization's Self-Reporting Questionnaire (SRQ-20). Presence of behavioural problems in children was measured using the Strengths and Difficulties Questionnaire. After adjustment, low educational attainment and domestic violence were found to be associated with caregiving strain, whereas dissatisfaction with social support from family, behavioural problems in children, and domestic violence strongly predicted psychological morbidities. Addressing the mental healthcare needs of parents may help in downsizing the impact of psychological morbidities on the well-being of children with hearing impairment.

  10. A systematic review of systematic reviews on interventions for caregivers of people with chronic conditions.

    Science.gov (United States)

    Corry, Margarita; While, Alison; Neenan, Kathleen; Smith, Valerie

    2015-04-01

    To evaluate the effectiveness of interventions to support caregivers of people with selected chronic conditions. Informal caregivers provide millions of care hours each week contributing to significant healthcare savings. Despite much research evaluating a range of interventions for caregivers, their impact remains unclear. A systematic review of systematic reviews of interventions to support caregivers of people with selected chronic conditions. The electronic databases of PubMed, CINAHL, British Nursing Index, PsycINFO, Social Science Index (January 1990-May 2014) and The Cochrane Library (Issue 6, June 2014), were searched using Medical Subject Heading and index term combinations of the keywords caregiver, systematic review, intervention and named chronic conditions. Papers were included if they reported a systematic review of interventions for caregivers of people with chronic conditions. The methodological quality of the included reviews was independently assessed by two reviewers using R-AMSTAR. Data were independently extracted by two reviewers using a pre-designed data extraction form. Narrative synthesis of review findings was used to present the results. Eight systematic reviews were included. There was evidence that education and support programme interventions improved caregiver quality of life. Information-giving interventions improved caregiver knowledge for stroke caregivers. Education, support and information-giving interventions warrant further investigation across caregiver groups. A large-scale funded programme for caregiver research is required to ensure that studies are of high quality to inform service development across settings. © 2014 John Wiley & Sons Ltd.

  11. Issues Faced by Family Caregivers of Hospice Patients with Head and Neck Cancers.

    Science.gov (United States)

    McMillan, Susan C; Rodriguez, Carmen; Wang, Hsiao-Lan; Elliott, Amanda

    2015-01-01

    The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.

  12. Communication Coaching: A Case Study of Family Caregiver Burden.

    Science.gov (United States)

    Wittenberg, Elaine; Ferrell, Betty; Koczywas, Marianna; Ferraro, Catherine

    2017-04-01

    Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making.
. The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication. 
. The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication.
. Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication support and training and the potential benefits of such training.

  13. Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke.

    Science.gov (United States)

    Kamel, Andaleeb Abu; Bond, A Elaine; Froelicher, Erika Sivarajan

    2012-04-01

    Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended. © 2012 Blackwell Publishing Asia Pty Ltd.

  14. Adult informal caregivers reporting financial burden in Hawaii, Kansas, and Washington: Results from the 2007 Behavioral Risk Factor Surveillance System.

    Science.gov (United States)

    Kusano, Claudia T; Bouldin, Erin D; Anderson, Lynda A; McGuire, Lisa C; Salvail, Florentina R; Simmons, Katrina Wynkoop; Andresen, Elena M

    2011-10-01

    Given the unpaid nature of the work, informal caregiving can create a financial burden for caregivers. Little has been done to identify specific predictors of experiencing financial burden. This study investigated demographic and health factors comparing caregivers who reported having or not having financial burden. Data are derived from adult caregivers (N = 3,317) as part of the 2007 Behavioral Risk Factor Surveillance System in Hawaii, Kansas, and Washington. The adjusted odds ratios for reporting a financial burden were estimated for demographic and other risk factors. Caregivers who reported a financial burden were younger, had lower incomes, were more likely to be current smokers, have had a stroke, and rate their health as fair or poor compared to caregivers who did not report a financial burden. Caregivers who were younger (ages 18-34), resided with care recipients, spent 20-39 hours per week providing care, and reported having a disability were at a statistically significantly higher odds of reporting a financial burden. Given the current economic difficulties faced by many Americans, further insights into the perceived financial burdens experienced by informal caregivers as well as linkages to policy and programs designed to support caregivers are critical for public health professionals to address the expanding needs in states and communities. Published by Elsevier Inc.

  15. Systematic care for caregivers of people with dementia in the ambulatory mental health service: designing a multicentre, cluster, randomized, controlled trial

    Directory of Open Access Journals (Sweden)

    Adang Eddy

    2009-06-01

    Full Text Available Abstract Background Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD. The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study. Methods and design In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives. Discussion A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in

  16. Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

    Directory of Open Access Journals (Sweden)

    Paula W. Rushton PhD

    2017-04-01

    Full Text Available Objective: In this study, we aimed to describe the burden of family caregivers providing powered wheelchair-related and overall assistance and test the hypotheses that caregiver burden correlates with participation, wheelchair skills capacity, anxiety, depression, and social support. Methods: Cross-sectional study. Participants included 35 family caregivers of powered wheelchair users. Caregivers were assessed using the Power Mobility Caregiver Assistive Technology Outcome Measure, Late Life Disability Instrument, Wheelchair Skills Test Questionnaire for caregivers, Hospital Anxiety and Depression Scale, and Interpersonal Support Evaluation List–12. Results: The most burdensome powered wheelchair assistance items were providing verbal hints/directions, needing to be nearby, anxiety, and fear that user may be harmed. The most burdensome overall assistance item was feeling limited in recreational/leisure activities. Caregiver burden was significantly correlated with participation limitations, anxiety, depression, and social support. Discussion: Caregivers experience burden for wheelchair-related and overall help, especially psychological burden. Such results have implications for the type of resources required to support family caregivers.

  17. Social support seeking and self-efficacy-building strategies in enhancing the emotional well-being of informal HIV/AIDS caregivers in Ibadan, Oyo state, Nigeria.

    Science.gov (United States)

    Okeke, Bernedette Okwuchukwu

    2016-01-01

    This study examined the relative efficacy of social support seeking (SSS) and self-efficacy building (SEB) in the management of emotional well-being of caregivers of people suffering from HIV/AIDS. It was based at the United States President's Emergency Plan for AIDS Relief (PEPFAR) center in the University College Hospital, Ibadan, Oyo state, being the first and the largest teaching hospital in Nigeria. A 3 × 2 factorial design consisting of treatment and a control group was used. The columns have two levels of gender being male and female caregivers. One-hundred and sixty-five (165) caregivers who were taking care of people that are suffering from HIV/AIDS were purposively selected and randomly assigned to the treatment groups and control. The treatment was carried out for a period of eight weeks. Two null hypotheses were tested, both at .05 levels of significance. Data were collected with the use of standardized intruments rating scale; social support scale, general self-efficacy scale and emotional well-being scale. ANCOVA was used to establish significant treatment effects with the pretest as covariate. Even though SSS and SEB were both found to be effective in enhancing the emotional well-being of informal caregivers in this study when compared to the controls, SSS was significantly more effective than SEB in achieving this goal. Since the HIV/AIDS patients cannot be adequately cared for in the hospital settings due to severe shortages of material, personnel and time, serious efforts should be made by the three levels of the health care system viz: the primary, secondary and tertiary health care systems, to encourage the employment of the psychological management of caregivers of people suffering from HIV/AIDS. Also, the psychologists, clinical psychologists and the significant others should be encouraged to employ this psychological management in the care of HIV/AIDS informal caregivers.

  18. Anxiety, stress and depression in family caregivers of the mentally ill.

    Science.gov (United States)

    Cabral, Lídia; Duarte, João; Ferreira, Manuela; dos Santos, Carlos

    2014-11-01

    The current policy guidelines on mental health aim to keep the mentally ill within the community, with the development of social support, including families, hence the emergence of the role of the family caregiver. To identify socio-demographic variables influencing anxiety, depression and stress for the informal caregivers of the mentally ill; to determine the influence of family background variables on caregiver anxiety, depression and stress; to analyse the relationship between social support and caregiver overload with caregiver anxiety, depression and stress. Cross-sectional, descriptive and correlational study with 104 caregivers, mostly female (62.5%), aged between 22 and 77 years with a mean age of 52.03 years. The following were used as instruments: the Family Apgar Scale; the Satisfaction with Social Support Scale (ESSS); the Caregiver Overload Scale (ESC); the Anxiety, Depression and Stress Scales (EADS-21). We found that females have higher rates (Panxiety, depression and stress; participants with less education have more anxiety than those with higher and secondary education (P=.001); caregivers living in rural areas have higher levels of depression (P=.044) and stress (P=.041); those who perceive belonging to families with marked dysfunctions have higher levels of depression (P=.0.001) and stress (P=.000); the higher the overload, the higher the levels of anxiety (P=.002), depression and stress (P=.000). I tis necessary to develop strategies for local and community intervention to promote mental health and prevent mental illness. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

  19. Social Isolation among Caregivers of Court-Involved Youths: A Qualitative Investigation

    Science.gov (United States)

    Forsbrey, April D.; Frabutt, James M.; Smith, Heather L.

    2005-01-01

    The authors used qualitative research methodology to examine the lives of caregivers of court-involved youths. Caregiver social isolation, including overall lack of support, lack of school support, and isolation from self, emerged as a salient theme across 7 domains. Implications for counselors are discussed, and brief descriptions of several…

  20. Informal caregivers in hospitals: Opportunities and threats.

    Science.gov (United States)

    Amiresmaili, Mohammadreza; Emrani, Zahra

    2018-05-20

    High hospital costs are a challenge that health system face. Additionally, studies identified manpower deficiency as a problem in health system. Hospital is a place where patients with different physical and mental conditions come to. Their families and friends' companionship can facilitate this situation for them. This study illustrates the roles of informal caregivers in hospital. This is a phenomenological qualitative study. Data were gathered through semistructured interviews. We interviewed 22 informal caregivers and 9 nurse staffs from different departments of hospital. They were selected through purposeful and snowball sampling approach. The framework method was used for data analysis. We found 3 main themes including (a) roles of informal caregivers, (b) opportunities of presence of the informal caregivers in the hospital, and (c) threats of presence of informal caregivers. This study shows some roles for informal caregivers including mental supports, consultation, decision-making, and care roles. Concerning the shortage of manpower in Iran's hospitals, nurses have less time to take care of each patient; therefore, using informal caregivers as an implicit strategy to overcome nursing shortage and to reduce hospital costs seems to be beneficial. We suggest that an appropriate plan is necessary to make use of them for filling this gap to some extent, as well as providing training sessions and facilities for companions acting as informal caregivers. Copyright © 2018 John Wiley & Sons, Ltd.

  1. The influence of culture on the experiences of Korean, Korean American, and Caucasian-American family caregivers of frail older adults: a literature review.

    Science.gov (United States)

    Kong, Eun-Hi

    2007-03-01

    The purpose of this review is to explore cultural influences on the experiences of Korean, Korean American, and Caucasian American family caregivers caring for frail older adults in terms of the selection of a primary caregiver, caregiving motivation, support/help-seeking, and negative emotional responses(depression and burden). Seven electronic databases were searched to retrieve studies from 1966 to 2005. Thirty-two studies were identified. This review supported cultural influences on the selection of primary caregiver, caregiving motivation, and support/help-seeking among the three caregiver groups. In Korean caregivers, the major primary caregivers were daughters-in-law while among Korean American and Caucasian American caregivers, the major primary caregivers were daughters or spouses. As a major caregiving motivation, Caucasian American caregivers reported filial affection while Korean caregivers and Korean American caregivers reported filial obligation. Korean caregivers reported higher extended family support, while Caucasian American caregivers reported higher utilization of formal support. Korean caregivers showed the highest levels of depression followed by Korean American caregivers and Caucasian American caregivers. In order to develop culturally appropriate interventions and policies, more research is needed to further explain these differences among the three groups, especially regarding support/help-seeking and negative emotional responses.

  2. The experience of caregivers of people living with serious mental disorders: a study from rural Ghana

    Directory of Open Access Journals (Sweden)

    Kenneth Ayuurebobi Ae-Ngibise

    2015-05-01

    Full Text Available Background: Families and friends who give care to people with mental disorders (MDs are affected in a variety of ways and degrees. The interplay of caregiving consequences: poverty, discrimination and stigma, lack of support from others, diminished social relationships, depression, emotional trauma, and poor or interrupted sleep are associated caregiver burden. Objective: The burden of care on caregivers of people living with MDs was assessed in two districts located in the middle part of Ghana. Coping strategies and available support for caregivers of MDs were also assessed. Design: A qualitative study was carried out involving 75 caregivers of participants with MDs registered within the Kintampo Health and Demographic Surveillance Systems. Data were gathered from caregivers about their experiences in providing care for their relations with MDs. Results: Caregivers reported various degrees of burden, which included financial, social exclusion, emotional, depression, and inadequate time for other social responsibilities. Responsibilities around caregiving were mostly shared among close relatives but to a varying and limited extent. Religious prayers and the anticipation of cure were the main coping strategies adopted by caregivers, with expectation of new treatments being discovered. Conclusions: Emotional distress, stigma, financial burden, lack of support networks, social exclusion, health impact, and absence of decentralised mental health services were experienced by family caregivers. These findings highlight the need for interventions to support people with MDs and their caregivers. This might include policy development and implementation that will decentralise mental health care provision including psychosocial support for caregivers. This will ameliorate families’ financial and emotional burden, facilitate early diagnosis and management, reduce travel time to seek care, and improve the quality of life of family caregivers of persons

  3. A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers.

    Science.gov (United States)

    Hartnick, Christopher; Diercks, Gillian; De Guzman, Vanessa; Hartnick, Elizabeth; Van Cleave, Jeanne; Callans, Kevin

    2017-08-01

    Approximately 4000 U.S. children undergo tracheostomy yearly [1], and these surgeries often result in hospital re-admissions that have definite cost and caregiver burdens due to complications that are avoidable with proper training and support. To assess the impact of a Family-Centered Care Coordination (FCCC) program on the quality of care received by children undergoing tracheostomy and their caregivers. Caregivers of children undergoing tracheostomies from January 2012 to January 2013 and then a different set of caregivers of children undergoing tracheostomies from January 2015 to January 2016 completed both the Pediatric Tracheostomy Health Status Instrument (PTHSI) 1 month after discharge and the Medical Complications Associated with Pediatric Tracheostomy (MCAT) questionnaire 6 months after initial tracheostomy. To assess complication rates, these same sets of caregivers were asked to complete the MCAT and only those who provided complete medical data for all 6 months were included for comparative analysis. The PTHSI and MCAT were administered at Massachusetts Eye and Ear in a hospital setting. Ten caregivers of children undergoing tracheostomies completed the PTHSI before FCCC program implementation and12 caregivers then completed the PTHSI after FCCC implementation. For each of the 2 groups, 5 caregivers provided complete data on the MCAT questionnaires. FCCC is a collection of programs, policies, and tools designed to ensure safe transition home for children undergoing tracheostomies, reduce re-admission rates, and minimize "caregiver burden". The PTHSI is a validated caregiver quality of life instrument that was supplemented by the MCAT which records post-discharge medical issues following tracheostomy that relate specifically to the tracheotomy placement. The time to first follow-up appointment decreased from 6.4 weeks (SD = 1.52) to 6 days (SD = 0.18) with FCCC implementation. The total MCAT scores decreased from 15.2 (SD = 1.1) to 1.3 (SD = 1

  4. Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology

    NARCIS (Netherlands)

    Exel, J.; de Graaf, G.; Brouwer, W.

    2007-01-01

    Objective: To investigate informal caregivers' attitudes toward respite care. Method: Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A

  5. Caregivers' resilience is independent from the clinical symptoms of dementia.

    Science.gov (United States)

    Dias, Rachel; Simões-Neto, José Pedro; Santos, Raquel Luiza; Sousa, Maria Fernanda Barroso de; Baptista, Maria Alice Tourinho; Lacerda, Isabel Barbeito; Kimura, Nathalia Ramos Santos; Dourado, Marcia Cristina Nascimento

    2016-12-01

    Resilience is the capacity for successful adaptation when faced with the stress of adversity. We aimed to investigate the relationship between caregivers' resilience and the sociodemographic and clinical factors of people with dementia. Cross-sectional assessment of 58 people with dementia and their caregiver dyads showed that most caregivers were female adult children. The caregivers reported moderate to higher levels of resilience, lower levels of anxiety and depressive symptoms and moderate levels of burden. Resilience was not related to the caregiver's gender (p = 0.883), nor clinical (p = 0.807) or emotional problems (p = 0.420). The regression showed that resilience was related to the caregiver's quality of life (p caregivers' resilience and the sociodemographic and clinical characteristics of people with dementia. We can assume that resilience is an individual characteristic. Support groups should also focus on the factors that may increase resilience among caregivers.

  6. Family caregiving challenges in advanced colorectal cancer: patient and caregiver perspectives.

    Science.gov (United States)

    Mosher, Catherine E; Adams, Rebecca N; Helft, Paul R; O'Neil, Bert H; Shahda, Safi; Rattray, Nicholas A; Champion, Victoria L

    2016-05-01

    Family caregivers of advanced colorectal cancer patients may be at increased risk for psychological distress. Yet their key challenges in coping with the patient's illness are not well understood. Soliciting both patient and caregiver perspectives on these challenges would broaden our understanding of the caregiving experience. Thus, the purpose of this research was to identify caregivers' key challenges in coping with their family member's advanced colorectal cancer from the perspective of patients and caregivers. Individual, semi-structured qualitative interviews were conducted with 23 advanced colorectal cancer patients and 23 primary family caregivers. Interview data were analyzed via thematic analysis. In nearly all cases, patient and caregiver reports of the caregiver's key challenge were discrepant. Across patient and caregiver reports, caregivers' key challenges included processing emotions surrounding the patient's initial diagnosis or recurrence and addressing the patient's practical and emotional needs. Other challenges included coping with continual uncertainty regarding the patient's potential functional decline and prognosis and observing the patient suffer from various physical symptoms. Findings suggest that eliciting the perspectives of both patients and caregivers regarding caregivers' challenges provides a more comprehensive understanding of their experience. Results also point to the need to assist caregivers with the emotional and practical aspects of caregiving.

  7. Information-seeking at a caregiving website: a qualitative analysis.

    Science.gov (United States)

    Kernisan, Leslie P; Sudore, Rebecca L; Knight, Sara J

    2010-07-28

    The Internet is widely used for health information, yet little is known about the online activity of family caregivers of elders, a rapidly growing group. In order to better understand the online information-seeking activity of "e-caregivers" and other visitors at a caregiving website, we undertook a qualitative analysis of survey data from a website marketed as a comprehensive resource for adults caring for aging parents. The objectives were to better understand what types of information are sought by those visiting a website focused on elder-care issues and to identify overarching themes that might inform future development of Internet resources related to caregiving and aging. From March 2008 to March 2009, a 5-question pop-up survey was offered 9662 times and completed 2161 times. For 1838 respondents, included was a free text answer to the question "What were you looking for?" and 1467 offered relevant and detailed responses. The survey also asked about satisfaction with the site, gender of the respondent, and relationship to the individual being cared for. Content analysis was used to develop a coding dictionary, to code responses into information-seeking categories, and to identify overarching themes. Of the respondents (76% of whom were female), 50% indicated they were caring for parents, 17% for themselves only, and 31% for others. Over half (57%) reported finding what they were looking for, and 46% stated they were extremely likely to recommend the website. Frequently mentioned information-seeking categories included "health information," "practical caregiving," and "support." Respondents also requested information related to housing, legal, insurance, and financial issues. Many responses referred to multiple comorbid conditions and complex caregiving situations. Overarching themes included (1) a desire for assistance with a wide range of practical skills and information and (2) help interpreting symptoms and behavior, such as knowing what life impacts to

  8. A manual-based vocational rehabilitation program for patients with an acquired brain injury

    DEFF Research Database (Denmark)

    Høffding, Louise.K.Enggaard; Nielsen, Maria Haahr; Rasmussen, Morten Arendt

    2017-01-01

    as a work placement program including supported employment. Furthermore, the intervention will include a family intervention program followed up by support to one individual family caregiver. The primary outcomes are increased work or study rate at six-month follow-up. Moreover, a budget impact analysis...... and possibly a cost-utility analysis of the intervention will be performed. DISCUSSION: This study consists of a comprehensive multidiciplinary VR intervention involving several parties such as the municipalities, a specialized rehabilitation team, and patients' own family caregivers. If this intervention...

  9. The cortisol awakening response in caregivers of schizophrenic offspring shows sensitivity to patient status.

    Science.gov (United States)

    Gonzalez-Bono, Esperanza; De Andres-Garcia, Sara; Moya-Albiol, Luis

    2011-01-01

    Taking care of offspring during a prolonged period of time is probably one of the most stressful life experiences for parents. The present study compares the cortisol awakening response (CAR) in 38 long-term caregivers (mothers and fathers of schizophrenic relatives) with a control group of 32 non-caregivers. Factors such as general stress, caregiver burden, patient severity, and institutionalization were studied. Although a blunted CAR was observed in caregivers in comparison with controls, this difference was not significant. Among caregivers, the absence of institutionalization for the patient is associated with a lack of CAR in caregivers in comparison with caregivers of institutionally supported patients. General stress, caregiver burden, and patient severity themselves did not favor significant changes in CAR. CAR shows greater sensitivity to institutional support than patient severity and perceived stress. Further research is needed to explain the impact of these factors on health and the psychological factors involved.

  10. Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.

    Science.gov (United States)

    Davis, Lynne C; Sander, Angelle M; Struchen, Margaret A; Sherer, Mark; Nakase-Richardson, Risa; Malec, James F

    2009-01-01

    To determine whether caregivers' medical and psychiatric histories, coping style, and social support predict global distress and perceived burden. Correlational, cohort study. A total of 114 caregivers of persons with moderate to severe traumatic brain injury, assessed 1 year postinjury. Ratings of caregivers' medical and psychiatric history; Disability Rating Scale; Ways of Coping Questionnaire; Multidimensional Scale of Perceived Social Support; Brief Symptom Inventory; and Modified Caregiver Appraisal Scale. Caregivers' medical and psychiatric histories predicted global distress, after accounting for education, sex, income, and relationship, as well as disability of the person with injury. Increased use of escape-avoidance as a coping strategy was related to increased distress. Perceived burden was predicted by disability in the person with injury, use of escape-avoidance, and perceived social support. Caregivers' preinjury functioning is more predictive of global distress, whereas the functioning of the person with injury is more predictive of injury-related burden. Caregivers' medical and psychiatric histories are important considerations when targeting interventions; global stress management strategies may be as important as assisting with injury-related issues.

  11. Factors associated with quality of life of outpatients with breast cancer and gynecologic cancers and their family caregivers: a controlled study

    Directory of Open Access Journals (Sweden)

    Hamad Hussein MA

    2007-06-01

    Full Text Available Abstract Background Quality of life (QOL issues are of interest in cancer because effective methods of treatment and detection have led to an increase in the number of long-term survivors. The objectives of the study were: to assess the subjective QOL of stable Sudanese women cancer outpatients and their family caregivers, using the WHO 26-item QOL Instrument; compare with matched general population groups, as well as diabetic and psychiatric patient groups; examine patient-caregiver concordance in ratings; and assess the variables associated with their QOL, with a view to identifying factors that can enhance quality of care. Methods Responses of oncology outpatients with breast cancer (117, cervical cancer (46 and ovarian cancer (18 (aged 44.6, SD 11.5 were compared with those of their family caregivers and matched general population groups. Data were analyzed by univariate and multivariate statistics. Results The cancer groups had similar QOL domain scores, which were significantly lower than those of their caregivers, but higher than the control group as well as those of psychiatric and diabetic patients studied previously. Patients who were married, with higher education, better employment, and with longer duration of illness had higher QOL. Patients on radiotherapy and their caregivers had higher QOL scores. Correlations between patient's ratings and caregiver impression of patient's QOL were high. Caregiver impression was a significant predictor of patient's and caregiver's QOL. Other predictors for the patient were: currently feeling sick and duration of illness; for the caregiver: feeling sick, relationship to patient, and age. Conclusion Cancer patients in stable condition and with psychosocial support can hope to enjoy good QOL with treatment. The findings constitute an evidence base for the country's cancer care program, to boost national health education about prognosis in cancer. Families living with women cancer patients are

  12. Moving beyond caregiver burden: identifying helpful interventions for family caregivers.

    Science.gov (United States)

    Sorrell, Jeanne M

    2014-03-01

    Family members serving as informal caregivers for loved ones often experience physical, psychological, emotional, social, and financial consequences that can be conceptualized as caregiver burden. As the number of older adults in our society continues to increase, there will be even more demand for family caregivers. It is important to move beyond a focus on the statistics and characteristics of caregiver burden and identify helpful interventions to reduce this burden. Interventions that decrease caregiver burden can enable family caregivers to delay placement of the individual in an institutional setting and improve quality of life for both the caregiver and care recipient. Copyright 2014, SLACK Incorporated.

  13. Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving.

    Science.gov (United States)

    Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu

    2018-05-21

    This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong. Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition. As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress. As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.

  14. Caregiver resilience in palliative care: a research protocol.

    Science.gov (United States)

    Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria

    2016-02-01

    To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. This is a multicentre cross-sectional study. We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. © 2015 John Wiley & Sons Ltd.

  15. Gender inequalities in care-giving in Canada.

    Science.gov (United States)

    Dowler, J M; Jordan-Simpson, D A; Adams, O

    1992-01-01

    In Canada today, as in the past, men and women devote different amounts of time and effort to providing health care to their family and in the broader community. This paper examines "the social distinction between masculinity and femininity" in care-giving. Issues of gender inequality in care-giving have the potential to affect the formal health care system as the burden of caring will increase over the next few decades with the aging of society. This increase in need for care is occurring at a time when primary care providers--women--have additional demand on their time. Canadian society has been facing a series of social, demographic and economic shifts such as a higher divorce rate, two-income families, women's increasing professional commitments and first pregnancies at later ages, these factors may not affect women's willingness to care for others. However women may need support to provide the care. Assuming present trends, increasing need for families to care for elderly relatives may be inevitable. Perhaps society will recognize this need and provide support to those providing informal care. This could take the form of allowing individuals more time to provide care through child care leave, leave to care for parents and job-sharing. Support to those providing informal care might also be facilitated through community support services such as respite care, household maintenance, psychological support to care-givers, support groups, informal networks within a community and consideration of unconventional support methods.

  16. Parents' and caregivers' experiences and behaviours when eating out with children with a food hypersensitivity.

    Science.gov (United States)

    Begen, Fiona M; Barnett, Julie; Barber, Miriam; Payne, Ros; Gowland, M Hazel; Lucas, Jane S

    2017-07-20

    For parents and caregivers of food hypersensitive (FH) children, accommodating their child's dietary needs when eating out can be a challenging experience. This study explored caregivers' experiences and behaviours when eating out with their FH child in order to gain insights into how they support and prepare their child in negotiating safe eating out experiences. A cross-sectional, qualitative design was used. In depth, semi-structured interviews were carried out with 15 caregivers of children with FH. Interviews were analysed using framework analysis. Caregivers reported a number of issues relating to eating out with their FH child, or allowing their child to eat out without their supervision. Through themes of 'family context', 'child-focused concerns', and 'venue issues', caregivers described how they managed these and explained the limitations and sacrifices that FH imposed on their child, themselves, and family members. Through deeper understanding of the anxieties, negotiations and compromises experienced by caregivers of children with FH when they are eating out, clinicians and support charities can tailor their support to meet the needs of caregivers and children. Support and education provision should focus on providing caregivers of children with FH the tools and strategies to help enable safe eating out experiences.

  17. The 'Charter of Rights for Family Caregivers'. The role and importance of the caregiver: an Italian proposal.

    Science.gov (United States)

    Antonella, Sisto; Flavia, Vicinanza; Daniela, Tartaglini; Giuseppe, Tonini; Daniele, Santini

    2017-01-01

    Cancer diagnosis not only shakes the lives of those who are affected, but also has impacts on the entire family system, which is involved as if it were itself an organism affected by cancer. The oncological illness may cause a breakdown of the existing balance in the family system and demands a progressive degree of mutual adaptation to family members. The 'VoiNoi' Listening Centre of the Campus Bio-Medico University Hospital in Rome has been close to caregivers for several years, to support them in the difficult task of providing assistance through individual or group psychological support therapy and health education. The 'Charter of Rights for Family Caregivers' stems from the experience gained over the years, with the aim of protecting, supporting and strengthening the role and the assistance activity that families carry out in support of their loved ones under conditions of fragility.

  18. Representations by Caregivers, Teachers, and Children on Food, Nutrition, Health, and School Breakfast Contributions for the "ESNUT" Nutritional Stabilization Program

    Directory of Open Access Journals (Sweden)

    Josefina Gallegos-Martínez

    Full Text Available Objective.This work sought to determine the social representations conferred by caregivers, teachers, and children to food, health, and nutrition and the school breakfast program for children from three to seven years of age in the city of San Luis Potosí, San Luis Potosí, Mexico, through identifying a knowledge and practices and b meanings attributed on health and nutrition of children from three to seven years of age and on the school breakfast program. Methods. This was a qualitative health study. The sample included 33 mothers, 3 grandmothers, 1 father, 30 children from 3 to 7 years of age, and 8 teachers who signed an informed consent. The data were collected through a semi-structured interview and treated through content analysis modality thematic analysis. Results. The analysis yielded the categories: knowledge on food, the health-feeding relation, customs and practices of the child's feeding, and meanings of the school breakfast program. Conclusion. On the reflection on the representations of the different players included in the school breakfast program, elements become manifest that would support an educational intervention by nursing, which would have to be based on the family as the central figure to provide good nutrition and teach good habits.

  19. Transition from the spouse dementia caregiver role: A change for the better?

    Science.gov (United States)

    Brown, Lynsey J; Bond, Malcolm J

    2016-07-01

    One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient's move into residential care or death) will affect caregivers' outcomes. A synthetic cohort method compared caregivers' stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing. © The Author(s) 2014.

  20. Psychosocial impact of early onset dementia among caregivers.

    Science.gov (United States)

    Kimura, Nathália R S; Maffioletti, Virgínia L R; Santos, Raquel L; Baptista, Maria Alice Tourinho; Dourado, Marcia C N

    2015-01-01

    There is growing recognition of early onset dementia (EOD) as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD) and their caregivers. To analyze the psychosocial impact of EOD in family caregivers. The study design was qualitative. Nine EOD caregivers (7 women) were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

  1. The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers.

    Science.gov (United States)

    Dolce, Maria C

    2011-05-01

    To describe the experiences of cancer survivors and caregivers with healthcare providers in the context of the Internet as a source of health information. Qualitative description. Online cancer communities hosted by the Association of Cancer Online Resources. Purposive sample of 488 cancer survivors, with varying cancer types and survivorship stages, and caregivers. Secondary data analysis using Krippendorff's thematic clustering technique of qualitative content analysis. Survivorship, healthcare relationships, and the Internet. Disenchantment with healthcare relationships was associated with failed expectations related to evidence-based practice, clinical expertise, informational support, and therapeutic interpersonal communication. Survivors and caregivers exercised power in healthcare relationships through collaboration, direct confrontation, becoming expert, and endorsement to influence and control care decisions. Disenchantment propelled cancer survivors and caregivers to search the Internet for health information and resources. Conversely, Internet information-seeking precipitated the experience of disenchantment. Through online health information and resources, concealed failures in healthcare relationships were revealed and cancer survivors and caregivers were empowered to influence and control care decisions. The findings highlight failures in cancer survivorship care and underscore the importance of novel interdisciplinary programs and models of care that support evidence-informed decision making, self-management, and improved quality of life. Healthcare professionals need to receive education on survivors' use of the Internet as a source of health information and its impact on healthcare relationships. Future research should include studies examining the relationship between disenchantment and survivorship outcomes.

  2. Impact of Noncaregiving-Related Stressors on Informal Caregiver Outcomes.

    Science.gov (United States)

    Austrom, Mary Guerriero; Lu, Yvonne Yueh-Feng; Perkins, Anthony J; Boustani, Malaz; Callahan, Christopher M; Hendrie, Hugh C

    2014-08-01

    Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues. © The Author(s) 2014.

  3. The experience of meditation for people with amyotrophic lateral sclerosis and their caregivers - a qualitative analysis.

    Science.gov (United States)

    Marconi, Anna; Gragnano, Gaia; Lunetta, Christian; Gatto, Ramona; Fabiani, Viviana; Tagliaferri, Aurora; Rossi, Gabriella; Sansone, Valeria; Pagnini, Francesco

    2016-09-01

    There is a lack of studies about psychological interventions for people with amyotrophic lateral sclerosis (ALS) and their caregivers. We investigated the experience of a meditation training program tailored for ALS needs. People with ALS (pALS) and their caregivers that joined a meditation program for ALS were interviewed at the end of the program. Verbatims were analyzed with a qualitative approach. Both pALS and their caregivers reported a positive impact on their psychological well-being, promoted by an increase in acceptance and non-judgmental attitude. Furthermore, coping strategies seem to improve, with a positive effect on resilience skills. The ALS meditation training program seems to be an effective psychological intervention for the promotion of well-being in pALS and their caregivers.

  4. A comparative study to identify factors of caregiver burden between baby boomers and post baby boomers: a secondary analysis of a US online caregiver survey.

    Science.gov (United States)

    Kim, Heejung; Lee, Sangeun; Cheon, Jooyoung; Hong, Soyun; Chang, Mido

    2018-05-02

    Baby boomers' position in the caregiving context is shifting from caregiver to care recipient as the population ages. While the unique characteristics of baby boomer caregivers are well established in caregiving literature, there is limited information about the next caregiving group after the baby boomers. In this study, the sociodemographic and caregiving-related characteristics of the two generations are compared and specific factors contributing to caregiver burden between baby boomer and post baby boomer caregivers are identified. This cross-sectional and correlational study used secondary analysis of data from the National Alliance for Caregiving and the American Association of Retired Persons. A structured online survey was conducted in 2014 with randomly selected samples (n = 1069) in the United States focusing on sociodemographics, caregiving-related characteristics, and burden of care. Descriptive statistics, multivariate linear regression analyses, and Steiger's Z-test were used to identify group differences in multivariate factors related to caregiver burden in two generational groups. Baby boomers and post baby boomers experienced caregiver burden to a similar degree. Caregiving-related factors are more likely to increase burden of care than sociodemographics in both groups. Caregiving without choice and spending longer hours on caregiving tasks were common factors that increased the burden in both generational groups (all p values baby boomer caregivers reported additional challenges, such as unemployment during caregiving, the dual responsibility of both adult and child care, and a family relationship with the care recipient. Due to the aging population of baby boomers, post baby boomers encounter different challenges related to caregiving burden, which is often considered an additional workload in their life course. Current policy and program tailored to baby boomers should be re-designed to meet the different needs of emerging caregivers

  5. Quality of life in caregivers providing care for lung transplant candidates.

    Science.gov (United States)

    Lefaiver, Cheryl A; Keough, Vicki A; Letizia, Marijo; Lanuza, Dorothy M

    2009-06-01

    Caregivers are essential members of the health care team who provide care, valued at more than $250 billion each year, to millions of persons who require assistance with health and daily care. Patients with respiratory diseases who are waiting for a lung transplant are required to have an identified caregiver. The caregivers are rarely studied. To explore the relationships among the health status of caregivers of lung transplant candidates, caregivers' reaction to caregiving, and caregivers' perceived quality of life. This descriptive study examined the quality of life of lung transplant caregivers from a multidimensional perspective. Twenty-nine dyads of lung transplant candidates and their caregivers were recruited from a Midwestern medical center. Data were collected by self-report: caregivers completed the Quality of Life Index, SF-12 health survey, Profile of Mood States-Short Form, and the Caregiver Reaction Assessment. Caregivers reported favorable levels of quality of life, physical health, and mood during the pretransplant waiting phase. However, problem areas for caregivers during this time included fatigue, depression, and the financial impact of the transplant. Data analyses indicated that depression, caregiver general health, impact on finances, and lack of family support had the greatest effect on caregivers' quality of life. Nurses are urged to recognize the role of caregivers in the transplant process, ask about and listen to caregivers' needs, and include caregivers in the plan of care.

  6. Benefit finding and resilience in child caregivers.

    Science.gov (United States)

    Cassidy, Tony; Giles, Melanie; McLaughlin, Marian

    2014-09-01

    A substantial number of children are involved in informal caregiving and make a significant contribution to health care delivery. While this places high levels of demand on their coping resources, there is some evidence that these children find benefit in their caring role. A survey design using questionnaire data collection was used with a sample of 442 children (174 boys and 268 girls) between the ages of 12 and 16. The role of benefit finding and resilience was explored within a stress and coping model of the impact of caregiving. Hierarchical multiple regression analysis (HMRA) identified resilience and benefit finding as accounting for significant amounts of variance in positive health and mediating the impact of caregiving. In regard to negative health, only benefit finding played a significant role. Young caregivers do experience benefit finding and exhibit resilience although the relationship with caregiving burden was inverse. Benefit finding seems to be related to social recognition of the caregiving role and to family support. What is already known on this subject? There is some emerging evidence that child caregivers experience some positive effects or benefits from their caring in spite of the demands of the role. However, the main focus has been on reducing negative outcomes rather than on building resilience. What this study adds? This study provides evidence that young caregivers do experience benefit finding in situations where the role demand is not overly excessive and where the role is socially recognized. © 2013 The British Psychological Society.

  7. Caregiver Depression

    Science.gov (United States)

    ... will not sell or share your name. Caregiver Depression Tweet Bookmark this page | Email | Print Many caregivers ... depression See your doctor Treatment Coping Symptoms of depression Caregiving is hard — and can lead to feelings ...

  8. [Caregiving consequences in mental disorders--definitions and instruments of assessment].

    Science.gov (United States)

    Ciałkowska-Kuźmińska, Magdalena; Kiejna, Andrzej

    2010-01-01

    Severe mental illnesses have far-reaching consequences for both patients and their relatives. This paper reviews literature on the measures of caregiving consequences. Authors provide a condensed knowledge and research results in the area of caregiving consequences, especially both subjective and objective caregivers' burden. The consequences of care apply to carers' social and leisure activities, financial status, health condition. The burden of care has three fundamental causes: the reorganisation of mental health services, a social isolation of patients and their families and the lack of systemic support for caregivers. The problem of caregiving consequences has been investigated in several studies. In order to identify factors, which have impact on caregiver distress, a variety instruments have been developed. This paper focuses on questionnaires useful for the systematic assessment of both objective and subjective burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale (PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI), Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a reliable instrument for measuring caregiver consequences in mental healthcare.

  9. LGBT Caregiver Concerns

    Science.gov (United States)

    LGBT CAREGIVER CONCERNS IMPORTANT CONSIDERATIONS FOR LGBT CAREGIVERS LGBT CAREGIVER CONSIDERATIONS As a caregiver for someone with Alzheimer’s disease, you will face various challenges. Some are common among all ...

  10. Development and psychometric testing of the childhood obesity perceptions (COP) survey among African American caregivers: A tool for obesity prevention program planning.

    Science.gov (United States)

    Alexander, Dayna S; Alfonso, Moya L; Cao, Chunhua

    2016-12-01

    Currently, public health practitioners are analyzing the role that caregivers play in childhood obesity efforts. Assessing African American caregiver's perceptions of childhood obesity in rural communities is an important prevention effort. This article's objective is to describe the development and psychometric testing of a survey tool to assess childhood obesity perceptions among African American caregivers in a rural setting, which can be used for obesity prevention program development or evaluation. The Childhood Obesity Perceptions (COP) survey was developed to reflect the multidimensional nature of childhood obesity including risk factors, health complications, weight status, built environment, and obesity prevention strategies. A 97-item survey was pretested and piloted with the priority population. After pretesting and piloting, the survey was reduced to 59-items and administered to 135 African American caregivers. An exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) was conducted to test how well the survey items represented the number of Social Cognitive Theory constructs. Twenty items were removed from the original 59-item survey and acceptable internal consistency of the six factors (α=0.70-0.85) was documented for all scales in the final COP instrument. CFA resulted in a less than adequate fit; however, a multivariate Lagrange multiplier test identified modifications to improve the model fit. The COP survey represents a promising approach as a potentially comprehensive assessment for implementation or evaluation of childhood obesity programs. Copyright © 2016 Elsevier Ltd. All rights reserved.

  11. Real world implementation lessons and outcomes from the Worker Interactive Networking (WIN) project: workplace-based online caregiver support and remote monitoring of elders at home.

    Science.gov (United States)

    Mahoney, Diane M F; Mutschler, Phyllis H; Tarlow, Barbara; Liss, Ellen

    2008-04-01

    The objective of this research was to determine the feasibility of and receptivity to the first computerized workplace-based direct caregiver intervention and to assess the effects on businesses, working family caregivers, and their elderly relatives. Working family caregivers, with at least one health and/or safety concern related to an elder residing alone at home during the workday, were recruited from five companies (n = 27). Caregivers received free computer access to the Worker Interactive Networking (WIN) Internet online caregiver support group and a remote elder monitoring system at home for 6 months. The remote monitoring system provided Web-based status reports and e-mail/pager alerts when individualized parameters were exceeded. Motion sensor signals were transmitted to a transponder that uploaded via wireless cellular communications to the project server, thereby not interfering with elders' telephone use. Formative qualitative analyses clarified acceptance and implementation issues. Summative quantitative evaluation determined pilot intervention effects and was conducted by external evaluators. Despite interoperability and cellular reception issues, the system was successfully deployed across four states to a variety of businesses and housing types. Positive results occurred on worker morale, productivity, and reduction of caregiver stress. Participants found it easy to learn and use. Elders did not find the technology "intrusive" or "isolating." Contrary to their expectations, managers reported no abuse of Internet access. Workers expressed a willingness to pay for a similar system in the future ranging from $10 to $130, depending on the features. They would pay the most for the option involving a geriatric nurse coach. The WIN system innovatively tailored to users' wants, and provided users customized control and personalized support. Use of the system was associated with positive outcomes. Enrollment response suggests a specific niche market for

  12. Cytokines and depression in cancer patients and caregivers

    Directory of Open Access Journals (Sweden)

    Li M

    2017-11-01

    Full Text Available Madeline Li,1,2 Ekaterina Kouzmina,3 Megan McCusker,1 Danielle Rodin,4 Paul C Boutros,3,5,6 Christopher J Paige,6–8 Gary Rodin1,2 1Princess Margaret Cancer Centre, Department of Supportive Care, University Health Network, Toronto, Ontario, Canada; 2Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada; 3Informatics & Biocomputing Program, Ontario Institute for Cancer Research, Toronto, Ontario, Canada; 4Department of Radiation Oncology, University of Toronto, Toronto, Ontario, Canada; 5Department of Pharmacology & Toxicology, Toronto, Ontario, Canada; 6Department of Medical Biophysics, University of Toronto, Toronto, Ontario, Canada; 7Department of Immunology, University of Toronto, Toronto, Ontario, Canada; 8Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada Objective: A better understanding of the biobehavioral mechanisms underlying depression in cancer is required to translate biomarker findings into clinical interventions. We tested for associations between cytokines and the somatic and psychological symptoms of depression in cancer patients and their healthy caregivers.Patients and methods: The GRID Hamilton Rating Scale for Depression (Ham-D was administered to 61 cancer patients of mixed type and stage, 26 primary caregivers and 38 healthy controls. Concurrently, blood was drawn for multiplexed plasma assays of 15 cytokines. Multiple linear regression, adjusted for biobehavioral variables, identified cytokine associations with the psychological (Ham-Dep and somatic (Ham-Som subfactors of the Ham-D.Results: The Ham-Dep scores of cancer patients were similar to their caregivers, but their Ham-Som scores were significantly higher (twofold, p=0.016. Ham-Som was positively associated with IL-1ra (coefficient: 1.27, p≤0.001 in cancer patients, and negatively associated with IL-2 (coefficient: -0.68, p=0.018 in caregivers. Ham-Dep was negatively associated with IL-4 (coefficient: -0.67, p

  13. Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

    Science.gov (United States)

    Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim

    2013-03-27

    at risk of becoming overloaded. Whether people perceive that they have freedom of choice in caregiving is an important consideration in evaluating the type of intervention needed to support caregivers.

  14. Caregiver experiences and perceptions of stroke

    Directory of Open Access Journals (Sweden)

    Mary Thomas

    2008-11-01

    Full Text Available With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care. Opsomming Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer ‘n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie ‘n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi- gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is kwalitatief

  15. A couples’ based self-management program for heart failure: Results of a feasibility study

    Directory of Open Access Journals (Sweden)

    Ranak Trivedi

    2016-08-01

    Full Text Available Background: Heart failure (HF is associated with frequent exacerbations and shortened lifespan. Informal caregivers such as significant others often support self-management in patients with HF. However, existing programs that aim to enhance self-management seldom engage informal caregivers or provide tools that can help alleviate caregiver burden or improve collaboration between patients and their informal caregivers. Objective: To develop and pilot test a program targeting the needs of self-management support among HF patients as well as their significant others. Methods: We developed the Dyadic Health Behavior Change model and conducted semi-structured interviews to determine barriers to self-management from various perspectives. Participants’ feedback was used to develop a family-centered self-management program called SUCCEED: Self-management Using Couples’ Coping EnhancEment in Diseases. The goals of this program are to improve HF self-management, quality of life, communication within couples, relationship quality, and stress and caregiver burden. We conducted a pilot study with 17 Veterans with HF and their significant others to determine acceptability of the program. We piloted psychosocial surveys at baseline and after participants’ program completion to evaluate change in depressive symptoms, caregiver burden, self-management of HF, communication, quality of relationship, relationship mutuality, and quality of life. Results: Of the 17 couples, 14 completed at least 1 SUCCEED session. Results showed high acceptability for each of SUCCEED’s sessions. At baseline, patients reported poor quality of life, clinically significant depressive symptoms, and inadequate self-management of HF. After participating in SUCCEED, patients showed improvements in self-management of HF, communication, and relationship quality, while caregivers reported improvements in depressive symptoms and caregiver burden. Quality of life of both patients and

  16. The Burden Endured by Caregivers of Patients With Morquio A Syndrome

    Directory of Open Access Journals (Sweden)

    Christian J. Hendriksz MD

    2014-07-01

    Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.

  17. Factors Associated With Caregivers' Resilience in a Terminal Cancer Care Setting.

    Science.gov (United States)

    Hwang, In Cheol; Kim, Young Sung; Lee, Yong Joo; Choi, Youn Seon; Hwang, Sun Wook; Kim, Hyo Min; Koh, Su-Jin

    2018-04-01

    Resilience implies characteristics such as self-efficacy, adaptability to change, optimism, and the ability to recover from traumatic stress. Studies on resilience in family caregivers (FCs) of patients with terminal cancer are rare. This study aims to examine the factors associated with FCs' resilience in a terminal cancer care setting. This is a cross-sectional study of 273 FCs from 7 hospice and palliative care units in Korea. Resilience was categorized as high and low, and factors associated with resilience were grouped or categorized into subscales. A multivariate logistic regression analysis was used to examine relevant factors. High FCs' resilience was significantly associated with FCs' health status, depression, and social support. In a multivariate regression model, FCs' perception of good health (adjusted odds ratio [aOR] = 2.26, 95% confidence interval [CI] = 1.16-4.40), positive social support (aOR = 3.70, 95% CI = 1.07-12.87), and absence of depression (aOR = 3.12, 95% CI = 1.59-6.13) remained significantly associated with high FCs' resilience. Lack of family support is associated with and may be a cause of diminished resilience. And more concern should be paid to FCs to improve FCs' health and emotional status. Education programs might be effective for improving caregivers' resilience. Further research with supportive interventions is indicated.

  18. Informal Caregiving for Cancer Patients

    Science.gov (United States)

    Romito, Francesca; Goldzweig, Gil; Cormio, Claudia; Hagedoorn, Mariët; Andersen, Barbara L.

    2013-01-01

    According to the recent worldwide estimation by the GLOBOCAN project, in total, 12.7 million new cancer cases and 7.6 million cancer deaths occurred in 2008. The worldwide number of cancer survivors within 5 years of diagnosis has been estimated at be almost 28.8 million. Informal caregivers, such as family members and close friends, provide essential support to cancer patients. The authors of this report provide an overview of issues in the study of informal caregivers for cancer patients and long-term survivors in the United States and Europe, characterizing the caregivers commonly studied; the resources currently available to them; and their unmet needs, their psychosocial outcomes, and the psychosocial interventions tailored to their special circumstances. A broad overview of the state of research and knowledge, both in Europe and the United States, and observations on the directions for future research are provided. PMID:23695928

  19. Depression among family caregivers of community-dwelling older people who used services under the Long Term Care Insurance program: a large-scale population-based study in Japan.

    Science.gov (United States)

    Arai, Yumiko; Kumamoto, Keigo; Mizuno, Yoko; Washio, Masakazu

    2014-01-01

    To identify predictors for depression among family caregivers of community-dwelling older people under the Long Term Care Insurance (LTCI) program in Japan through a large-scale population-based survey. All 5938 older people with disabilities, using domiciliary services under the LTCI in the city of Toyama, and their family caregivers participated in this study. Caregiver depression was defined as scores of ≥16 on the Center for Epidemiological Studies Depression Scale (CES-D). Other caregiver measures included age, sex, hours spent caregiving, relationship to the care recipient, income adequacy, living arrangement, self-rated health, and work status. Care recipient measures included age, sex, level of functional disability, and severity of dementia. The data from 4128 pairs of the care recipients and their family caregivers were eligible for further analyses. A multiple logistic regression analysis was used to examine the predictors associated with being at risk of clinical depression (CES-D of ≥16). Overall, 34.2% of caregivers scored ≥16 on the CES-D. The independent predictors for depression by logistic regression analysis were six caregiver characteristics (female, income inadequacy, longer hours spent caregiving, worse subjective health, and co-residence with the care recipient) and one care-recipient characteristic (moderate dementia). This is one of the first population-based examinations of caregivers of older people who are enrolled in a national service system that provides affordable access to services. The results highlighted the importance of monitoring caregivers who manifest the identified predictors to attenuate caregiver depression at the population level under the LTCI.

  20. Accuracy of Caregiver Proxy Reports of Home Care Service Use.

    Science.gov (United States)

    Chappell, Neena L; Kadlec, Helena

    2016-12-01

    Although much of the research on service use by older adults with dementia relies on proxy reports by informal caregivers, little research assesses the accuracy of these reports, and that which does exist, does not focus on home care services. This brief report compares proxy reports by family caregivers to those with dementia with provincial Ministry of Health records collected for payment and monitoring. The four home care services examined include home nursing care, adult day care, home support, and respite care. Data come from a province-wide study of caregivers in British Columbia, Canada. Caregiver reports are largely consistent with Ministry records, ranging from 81.0% agreement for home support to 96.6% for respite care. Spouses living with the care recipient (the vast majority of the sample) are the most accurate. Others, whether living with the care recipient or not, have only a 50-50 chance of being correct.

  1. The Relationship Between Caregiving and Mortality After Accounting for Time-Varying Caregiver Status and Addressing the Healthy Caregiver Hypothesis.

    Science.gov (United States)

    Fredman, Lisa; Lyons, Jennifer G; Cauley, Jane A; Hochberg, Marc; Applebaum, Katie M

    2015-09-01

    Previous studies have shown inconsistent associations between caregiving and mortality. This may be due to analyzing caregiver status at baseline only, and that better health is probably related to taking on caregiving responsibilities and continuing in that role. The latter is termed The Healthy Caregiver Hypothesis, similar to the Healthy Worker Effect in occupational epidemiology. We applied common approaches from occupational epidemiology to evaluate the association between caregiving and mortality, including treating caregiving as time-varying and lagging exposure up to 5 years. Caregiving status among 1,068 women (baseline mean age = 81.0 years; 35% caregivers) participating in the Caregiver-Study of Osteoporotic Fractures study was assessed at five interviews conducted between 1999 and 2009. Mortality was determined through January 2012. Cox proportional hazards models were used to estimate adjusted hazard ratios and 95% confidence intervals adjusted for sociodemographics, perceived stress, and functional limitations. A total of 483 participants died during follow-up (38.8% and 48.7% of baseline caregivers and noncaregivers, respectively). Using baseline caregiving status, the association with mortality was 0.77, 0.62-0.95. Models of time-varying caregiving status showed a more pronounced reduction in mortality in current caregivers (hazard ratios = 0.54, 0.38-0.75), which diminished with longer lag periods (3-year lag hazard ratio = 0.68, 0.52-0.88, 5-year lag hazard ratios = 0.76, 0.60-0.95). Overall, caregivers had lower mortality rates than noncaregivers in all analyses. These associations were sensitive to the lagged period, indicating that the timing of leaving caregiving does influence this relationship and should be considered in future investigations. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  2. High perceived caregiver burden for relatives of patients following hip fracture surgery

    DEFF Research Database (Denmark)

    Ariza-Vega, Patrocinio; Ortiz-Piña, Mariana; Kristensen, Morten Tange

    2018-01-01

    treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing...... her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture......PURPOSE: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery. METHODS: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed...

  3. Psychosocial impact of early onset dementia among caregivers

    Directory of Open Access Journals (Sweden)

    Nathália R. S. Kimura

    2015-12-01

    Full Text Available Introduction: There is growing recognition of early onset dementia (EOD as a significant clinical and social problem because of its effects on physical and mental health of people with dementia (PWD and their caregivers. Objective: To analyze the psychosocial impact of EOD in family caregivers. Methods: The study design was qualitative. Nine EOD caregivers (7 women were recruited at a service for Alzheimer's disease and assessed using semi-structured interviews. Interpretative phenomenological analysis was used to analyze caregivers' reports. Results: Five themes emerged from the narratives: psychological and emotional impact; physical impact; financial and professional impact; social impact and need for support services. The majority of the caregivers of people with EOD perceived their emotional wellbeing as poor or extremely poor. Carers reported poor physical health, which tends to be longer-lasting than mental health problems. Two caregivers had to retire after the disclosure of the dementia diagnosis, and seven reduced their work loads because they had to look after PWD. Preserving the abilities of PWD is essential to maintain their self-esteem, dignity and sense of utility. For the caregivers, interventions and stimulating activities make PWD feel worthwhile and contribute to improving life. Conclusion: The caregivers of people with EOD assume the role of caregiver prematurely and need to balance this activity with other responsibilities. There is a need for more studies of EOD in order to improve understanding of the impact of this disease and to enable development of adequate services for PWD and their caregivers.

  4. Adult caregiving among American Indians: the role of cultural factors.

    Science.gov (United States)

    Goins, R Turner; Spencer, S Melinda; McGuire, Lisa C; Goldberg, Jack; Wen, Yang; Henderson, Jeffrey A

    2011-06-01

    With a sample of American Indian adults, we estimated the prevalence of adult caregiving, assessed the demographic and cultural profile of caregivers, and examined the association between cultural factors and being a caregiver. This is the first such study conducted with American Indians. Data came from a cross-sectional study of 5,207 American Indian adults residing on 2 closely related Lakota Sioux reservations in the Northern Plains and one American Indian community in the Southwest. Cultural factors included measures of cultural identity and traditional healing practices. Seventeen percent of our sample reported being caregivers. In both the Northern Plains and Southwest, caregiving was positively correlated with younger age, being a woman, larger household size, attending and participating in Native events, and endorsement of traditional healing practices. In both regions, attendance and participation in Native events and engagement in traditional healing practices were associated with increased odds of caregiving after adjusting for covariates. Only in the Northern Plains did we find that speaking some Native language at home was associated with increased odds of being a caregiver. Examination of interaction terms indicated some sex differences in the association between cultural factors and caregiving in the Northern Plains but not in the Southwest. Our findings indicate that greater cultural identity and engagement in traditional healing practices are related to caregiving in American Indian populations. Caregiving research, intervention efforts, and caregiving programs and services in Native communities should pay special attention to the dynamics of culture and caregiving.

  5. Predictors of caregiving satisfaction in informal caregivers of people with dementia

    DEFF Research Database (Denmark)

    de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana

    2015-01-01

    Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...

  6. A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members.

    Science.gov (United States)

    Dam, Alieske E H; Boots, Lizzy M M; van Boxtel, Martin P J; Verhey, Frans R J; de Vugt, Marjolein E

    2017-06-13

    Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks. Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes. Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance. Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

  7. Caregivers as the fulcrum of care for mentally ill in the community: The urban rural divide among caregivers and care giving facilities

    Directory of Open Access Journals (Sweden)

    R C Jiloha

    2016-01-01

    Full Text Available Illness trends, health beliefs, healthcare pathways, level of awareness, access to health care resources, level of social support, perceived stigma, burden, coping strategies, care giving appraisal, and cultural acceptance of modes of treatment are different in urban and rural settings along with different caregivers profile. This review will highlight these differences in light of their overall characteristics, and health seeking behavior. This further calls for empowering caregivers, understanding and exploring new dimensions of caregiving, and implementing holistic intervention for patients as well as caregiver′s well-being.

  8. Balancing competing needs mediates the association of caregiving demand with caregiver role strain and depressive symptoms of dementia caregivers: A cross-sectional study.

    Science.gov (United States)

    Liu, Hsin-Yun; Yang, Ching-Tzu; Wang, Yu-Nu; Hsu, Wen-Chuin; Huang, Tzu-Hsin; Lin, Yueh-E; Liu, Chin-Yi; Shyu, Yea-Ing L

    2017-12-01

    To examine the role of balancing competing needs in the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms). Caregivers who do not balance competing needs are more likely to experience negative caregiving outcomes, suggesting that balance mediates between caregiving demand and caregiving outcomes. Identifying a mediator of negative caregiving effects may help in developing tailored interventions for family caregivers of persons with dementia. A cross-sectional, correlational design. Data were collected from family caregivers' self-completed questionnaires between March 2013 - April 2014. A convenience sample of 120 family caregivers and care receivers with dementia was enrolled. We examined whether balance mediated the relationship between caregiving demand and caregiving outcomes (caregivers' role strain and depressive symptoms) by multiple regression analysis. To evaluate the significance of the indirect effect of caregiver balance, we used the Sobel test and Monte Carlo method, an alternative approach to testing mediation. Balancing competing needs completely mediated the association of caregiving demand with depressive symptoms and partially mediated the association of caregiving demand with role strain. Assessing caregivers' self-perceived sense of balance may help to identify caregivers at high risk for role strain and depressive symptoms. Interventions to enhance caregivers' perceived sense of balance between competing needs may provide a strategy for reducing the negative effects of caregiving. © 2017 John Wiley & Sons Ltd.

  9. Goals, beliefs, and concerns of urban caregivers of middle and older adolescents with asthma.

    Science.gov (United States)

    Gibson-Scipio, Wanda; Krouse, Helene J

    2013-04-01

    Caregiver goals, an integral part of a partnership for asthma management, have been found to influence asthma outcomes in children. These goals are likely to change during the transitional period of adolescence to address the needs of teenagers as they mature and assume greater responsibilities for their own care. Little is known about the goals, beliefs, and concerns of caregivers as they begin to shift responsibilities for asthma management to teens. This study sought to identify the asthma management goals, beliefs, and concerns of primarily African American caregivers of urban middle and older adolescents. Fourteen caregivers of urban African American adolescents aged 14-18 years with asthma participated in a focus group session. An iterative process was used to identify themes from the session related to asthma management goals, concerns, and beliefs of caregivers. Caregivers identified goals that related to supporting their teens' progress toward independent asthma self-management. They described significant concerns related to the teens' ability to implement asthma self-management, especially in school settings. Caregivers also revealed beliefs that represented knowledge deficits related to asthma medications and factors that improved or worsened asthma. Most caregivers identified grave concerns about school policies regarding asthma medication administration and the lack of knowledge and support provided by teachers and staff for their teen. Caregivers are an invaluable resource in the care of adolescents with asthma. An opportunity exists to improve caregiver understanding of asthma medications and to provide support through improvements in asthma care for adolescents in school-based settings.

  10. Comprehensive Early Stimulation Program for Infants. Instruction Manual [and] Early Interventionist's Workbook [and] Parent/Caregiver Workbook. William Beaumont Hospital Speech and Language Pathology Series.

    Science.gov (United States)

    Santana, Altagracia A.; Bottino, Patti M.

    This early intervention kit includes a Comprehensive Early Stimulation Program for Infants (CESPI) instruction manual, an early interventionist workbook, and ten parent/caregiver workbooks. The CESPI early intervention program is designed to provide therapists, teachers, other health professionals, and parents with a common-sense, practical guide…

  11. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

    Science.gov (United States)

    Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

    2015-09-01

    The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.

  12. Optimising self-care support for people with heart failure and their caregivers: development of the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention using intervention mapping.

    Science.gov (United States)

    Greaves, Colin J; Wingham, Jennifer; Deighan, Carolyn; Doherty, Patrick; Elliott, Jennifer; Armitage, Wendy; Clark, Michelle; Austin, Jackie; Abraham, Charles; Frost, Julia; Singh, Sally; Jolly, Kate; Paul, Kevin; Taylor, Louise; Buckingham, Sarah; Davis, Russell; Dalal, Hasnain; Taylor, Rod S

    2016-01-01

    We aimed to establish the support needs of people with heart failure and their caregivers and develop an intervention to improve their health-related quality of life. We used intervention mapping to guide the development of our intervention. We identified "targets for change" by synthesising research evidence and international guidelines and consulting with patients, caregivers and health service providers. We then used behaviour change theory, expert opinion and a taxonomy of behaviour change techniques, to identify barriers to and facilitators of change and to match intervention strategies to each target. A patient and public involvement group helped to identify patient and caregiver needs, refine the intervention objectives and strategies and deliver training to the intervention facilitators. A feasibility study (ISRCTN25032672) involving 23 patients, 12 caregivers and seven trained facilitators at four sites assessed the feasibility and acceptability of the intervention and quality of delivery and generated ideas to help refine the intervention. The Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention is a comprehensive self-care support programme comprising the "Heart Failure Manual", a choice of two exercise programmes for patients, a "Family and Friends Resource" for caregivers, a "Progress Tracker" tool and a facilitator training course. The main targets for change are engaging in exercise training, monitoring for symptom deterioration, managing stress and anxiety, managing medications and understanding heart failure. Secondary targets include managing low mood and smoking cessation. The intervention is facilitated by trained healthcare professionals with specialist cardiac experience over 12 weeks, via home and telephone contacts. The feasibility study found high levels of satisfaction and engagement with the intervention from facilitators, patients and caregivers. Intervention fidelity analysis and stakeholder feedback suggested

  13. Characteristics of the relationship that develops from nurse-caregiver communication during telecare.

    Science.gov (United States)

    Solli, Hilde; Hvalvik, Sigrun; Bjørk, Ida Torunn; Hellesø, Ragnhild

    2015-07-01

    To explore the relationship between nurses and caregivers using a web camera and web forum as the communication methods. In Norway and other European countries, there is an increased focus on ageing at home, which is aided by technology, as well as formal and informal care. The literature reveals that caregivers endure physical and mental burdens. With computer-mediated communication, such as telecare, it is possible for nurses to provide supportive care to caregivers in their homes. An explorative design using qualitative content analysis. Six nurses and nine caregivers with residential spouses suffering from stroke or dementia were interviewed two times over a six-month period. The nurses responded dynamically to the information they received and helped to empower the individual caregivers and to strengthen the interpersonal relationships between the caregivers. While some participants thought that meeting in a virtual room was close and intimate, others wanted to maintain a certain distance. The participants' altered their roles as the masters and receivers of knowledge and experience; this variation was based on a relationship in which mutual respect for one another and an interest in learning from one another allowed them to work together as partners to demonstrate the system and to follow-up with new caregivers. The flexibility of the service allows the possibility of engaging in a close, or to some extent, a more distant relationship, depending on the participants' attitudes towards using this type of service. Nurses can provide close care, support and information to caregivers who endeavour to master their everyday lives together with their sick spouses. The support seems to help the caregivers cope with their own physical and emotional problems. © 2015 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

  14. Gender roles, marital intimacy, and nomination of spouse as primary caregiver.

    Science.gov (United States)

    Allen, S M; Goldscheider, F; Ciambrone, D A

    1999-04-01

    Using data from a sample of married men and women undergoing treatment for cancer, we tested two potential hypotheses for the unequal representation of husbands and wives as spousal caregivers, including societal gender role norms and emotional closeness in the marital relationship. Multivariate analyses support both hypotheses; wives are only one third as likely as husbands to select their spouses as caregivers, and spouses who name their mates as confidants are three times more likely than those who do not to also name them as caregivers. We conclude that although gender role norms are key to caregiver selection, the intimacy inherent in the caregiving role renders an emotionally close marriage an important criterion to the selection of spouse as caregiver.

  15. Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

    Science.gov (United States)

    Basnyat, Iccha; Chang, Leanne

    2017-09-01

    In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

  16. Burden on informal caregivers of elderly cancer survivors: risk versus resilience.

    Science.gov (United States)

    Jones, Simeon B W; Whitford, Hayley S; Bond, Melissa J

    2015-01-01

    This study assessed psychological morbidity and resilience, including the subjective burden of 76 caregivers of elderly cancer survivors utilizing a cross-sectional questionnaire. Participants were mainly elderly female spouses, sole-caregiving > 35 hours per week; 19.1% and 23.6% reported moderate or greater anxiety and depression, respectively. A significant regression model found depression, emotion-focused coping, and greater years since diagnosis as significant predictors of subjective caregiver burden. Thus, caregiving appears a dominant role for this group and the Brief Assessment Scale for Caregivers of the Medically Ill (BASC) appears to be an efficient screening tool for psychological morbidity in this under-supported group.

  17. Advice for Loved Ones and Caregivers

    Science.gov (United States)

    ... constitutes the most effective, supportive and beneficial care partnership for you both. ADDITIONAL RESOURCES FOR LOVED ONES AND CAREGIVERS Our community on social media has recommended the below resources. Aging Parents and ...

  18. Mediators and Moderators of Dementia Caregiver Depression and CVD Risk Outcomes in the Pleasant Events Program

    OpenAIRE

    Ho, Jennefer S.

    2016-01-01

    Rationale: Alzheimer’s disease caregivers demonstrate significant elevations in depression compared with noncaregivers. Addressing caregiver depression is of high public health importance due to its ties with overall wellbeing, increased risk for cardiovascular diseases (CVD), and ability to sustain caregiving duties. Improving caregiver mental and physical health may not only decrease healthcare costs, but it may also delay institutionalization of Alzheimer’s disease patients. Despite existi...

  19. Seeking harmony in the provision of care to the stroke-impaired: views of Chinese family caregivers.

    Science.gov (United States)

    Lee, Regina L T; Mok, Esther S B

    2011-05-01

    To explore the coping strategies of Chinese family caregivers of stroke-impaired older relatives. Many stroke-impaired patients rely heavily on support from their families, and the daily lives of such family caregivers are severely impacted. However, services and support for family caregivers of stroke-impaired relatives in the home setting have received little attention. Appropriate and relevant information and support to family caregivers are important in facilitating the care-giving task. It is, therefore, necessary to understand the nature and demands of care-giving before planning specific educational and support programmes. Grounded theory. Fifteen Chinese family caregivers of stroke-impaired older relatives were recruited and interviewed in 2003 and 2004. Theoretical sampling and constant comparative analysis were used to recruit the sample and perform data analysis. Seeking harmony to provide care for the stroke-impaired was the core category for describing and guiding the family care-giving process, with five main stages: (1) living with ambiguity, (2) monitoring the recovery progress, (3) accepting the downfalls, (4) meeting family obligations and (5) reconciling with harmony. These issues were seldom discussed openly with health professionals. The findings indicated that Chinese family caregivers determine their own needs by seeking harmony to continue to provide care without thinking about getting help from others or their own health problems. These findings help to define some of the complex dynamics that have an impact on the development of partnership care and might challenge nurses practising in the community. Community nurses should assess and understand the coping strategies of family caregivers and assist them to engage in stress-reducing practices. This is an important partnership to be formed in stroke care for family caregivers in the community. The study findings will guide further development of family care-giving aspects in nursing practice

  20. Comparison of two psycho-educational family group interventions for improving psycho-social outcomes in persons with spinal cord injury and their caregivers: a randomized-controlled trial of multi-family group intervention versus an active education control condition.

    Science.gov (United States)

    Dyck, Dennis G; Weeks, Douglas L; Gross, Sarah; Lederhos Smith, Crystal; Lott, Hilary A; Wallace, Aimee J; Wood, Sonya M

    2016-07-26

    Over 12,000 individuals suffer a spinal cord injury (SCI) annually in the United States, necessitating long-term, complex adjustments and responsibilities for patients and their caregivers. Despite growing evidence that family education and support improves the management of chronic conditions for care recipients as well as caregiver outcomes, few systematic efforts have been made to involve caregivers in psycho-educational interventions for SCI. As a result, a serious gap exists in accumulated knowledge regarding effective, family-based treatment strategies for improving outcomes for individuals with SCI and their caregivers. The proposed research aims to fill this gap by evaluating the efficacy of a structured adaptation of an evidence-based psychosocial group treatment called Multi-Family Group (MFG) intervention. The objective of this study is to test, in a randomized-controlled design, an MFG intervention for the treatment of individuals with SCI and their primary caregivers. Our central hypothesis is that by providing support in an MFG format, we will improve coping skills of persons with SCI and their caregivers as well as supportive strategies employed by caregivers. We will recruit 32 individuals with SCI who have been discharged from inpatient rehabilitation within the previous 3 years and their primary caregivers. Patient/caregiver pairs will be randomized to the MFG intervention or an active SCI education control (SCIEC) condition in a two-armed randomized trial design. Participants will be assessed pre- and post-program and 6 months post-program. Intent to treat analyses will test two a priori hypotheses: (1) MFG-SCI will be superior to SCIEC for SCI patient activation, health status, and emotion regulation, caregiver burden and health status, and relationship functioning, and (2) MFG will be more effective for individuals with SCI and their caregivers when the person with SCI is within 18 months of discharge from inpatient rehabilitation compared

  1. Psychological Flexibility as a Buffer against Caregiver Distress in Families with Psychosis

    DEFF Research Database (Denmark)

    Jansen, Jens E; Haahr, Ulrik H; Lyse, Hanne-Grethe

    2017-01-01

    involved. Recent advances in cognitive behavioral therapy seem to converge on the importance of acceptance- and mindfulness based processes. Aim: To examine the impact of psychological flexibility on caregiver distress in the early phases of psychosis, while controlling for known predictors of caregiver...... user symptoms, drug use and global functioning, psychological flexibility was a significant predictor of caregiver distress. Conclusion: Greater level of psychological flexibility in caregivers, seems to be related to lower levels of caregiver distress. This finding corresponds to studies within......Background: Research has shown that caregivers of persons with psychosis play an invaluable role in recovery, but unfortunately, often report high levels of distress. While cognitive models of caregiver distress have been well-supported, there is still limited knowledge of the psychological factors...

  2. Validation of a model of family caregiver communication types and related caregiver outcomes.

    Science.gov (United States)

    Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

    2017-02-01

    Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

  3. Informing Informal Caregivers About Dementia Through an Experience-Based Virtual Reality Game

    DEFF Research Database (Denmark)

    Møller Jensen, Jette; Hageman, Michelle; Bang Løyche Lausen, Patrick

    2018-01-01

    In 2017 it was believed that nearly 50mio people suffered from dementia. Besides the actual patients, the group that is mostly affected by this disease are informal caregivers. Informal caregivers -- people without a formal education in the field of health care -- can suffer from severe physical-......-based Virtual Reality game and how it can inform informal caregivers about symptoms of dementia. Our initial exploration demonstrates the potential that such a game holds in supporting informal caregivers....

  4. Needs of caregivers of cancer patients: validation of the Mexican version of the Support Person Unmet Needs Survey (SPUNS-SFM).

    Science.gov (United States)

    Doubova, Svetlana V; Aguirre-Hernandez, Rebeca; Infante-Castañeda, Claudia; Martinez-Vega, Ingrid; Pérez-Cuevas, Ricardo

    2015-10-01

    The purpose of this study was to validate the Mexican version of the Support Person Unmet Needs Survey (SPUNS-SFM). A cross-sectional survey that included 826 primary caregivers of cancer patients was conducted from June to December 2013 at the Oncology Hospital of the Mexican Institute of Social Security in Mexico City. The validation procedure comprised (1) content validity through a group of experts; (2) construct validity through an exploratory factor analysis based on the polychoric correlation matrix; (3) internal consistency using Cronbach's alpha; (4) convergent validity between SPUNS-SFM and quality of life, anxiety-and-depression scales by calculating Spearman's rank correlation coefficient;( 5) discriminative validity through the Wilcoxon rank-sum test; and (6) test-retest reliability using intraclass correlation coefficient. SPUNS-SFM has 23 items with six factors accounting for 65 % of the total variance. The domains were concerns about the future, access and continuity of healthcare, information, work and finance, and personal and emotional needs. Cronbach's alpha values ranged from 0.70 to 0.88 among factors. SPUNS-SFM had moderate convergent validity compared with quality of life and depression-and-anxiety scales and good discriminative validity, revealing high needs for younger caregivers and more emotional needs for caregivers of patients with advanced cancer stages. Intraclass correlation coefficient between SPUNS-SFM measurements was 0.78. SPUNS-SFM is a valid and reliable tool to identify needs of caregivers of cancer patients.

  5. Development of older men's caregiving roles for wives with dementia.

    Science.gov (United States)

    Hellström, Ingrid; Håkanson, Cecilia; Eriksson, Henrik; Sandberg, Jonas

    2017-12-01

    This secondary analysis of qualitative interviews describes how older Swedish men approach the caregiver role for a wife with dementia, over time. An increasing number of male caregivers will become primary caregivers for partners living with dementia at home, and they will likely be caregivers for an extended period of time. It has been stated that caregiving experiences influence how older men think of themselves. The theoretical starting point is a constructivist position, offering an understanding of older caregiving men's constructions and reconstructions of themselves and their caregiver roles. Seven men, who were cohabiting with their wives, were interviewed on up to five occasions at home during a 5- to 6-year period. The findings comprise three themes; me and it, me despite it, it is me, depict how these men gradually take on and normalise the caregiving tasks, and how they develop and internalise a language based on their caring activities. The results provide understanding about the relationship between men as caregivers and how this influences them as individuals. By careful attention to each caregiving man's individual needs rather than making gendered assumptions about men and caring, the aim of the caregiver support for men might best target men's own meaning to the caring in their the everyday practices. © 2017 Nordic College of Caring Science.

  6. Decreased mental health care utilization following a psychosocial intervention in caregivers of hematopoietic stem cell transplant patients

    Directory of Open Access Journals (Sweden)

    Rita Ouseph

    2014-03-01

    Full Text Available Caregivers are known to experience increased morbidity when compared to non-caregivers. Does an intervention targeting caregiver distress affect their health care utilization? One hundred forty-eight caregivers of allogeneic hematopoietic stem cell transplant patients were randomized to treatment as usual (TAU or a psychoeducation, paced respiration, and relaxation (PEPRR intervention. Assessments of caregivers’ service utilization were collected at baseline and 1, 3, and 6 months post-transplant. During the first 30 days after patient transplant, caregiver medical and mental health professional service use decreased while support group attendance peaked. Mixed model regressions showed a significant decrease in mental health service use by the PEPRR group (P=0.001. At six months caregivers in TAU had predicted marginal probabilities of mental health services utilization over 10 times as high as caregivers in PEPRR (18.1% vs 1.5%. Groups failed to differ in medical service (P=0.861 or support group (P=0.067 use. We can conclude that participation in PEPRR compared to TAU was associated with reduced mental health service utilization. Caregiver psychosocial support services are critical to improve caregiver outcomes.

  7. Child's autism severity: effect on West Virginia caregiver satisfaction with school services.

    Science.gov (United States)

    Vohra, Rini; Madhavan, Suresh; Khanna, Rahul; Becker-Cottrill, Barbara

    2014-01-01

    Survey data was collected from 301 primary caregivers of children with autism registered at West Virginia Autism Training Center (WV ATC), to examine the impact of child's autism severity on caregiver satisfaction with school services. Satisfaction with six school services was measured via a 3-point Likert scale: speech-language therapy, occupational therapy, social skills training, physical therapy, behavioral interventions, and assistance in improving study skills. Ordinal logistic regressions showed that caregivers of children with high autism severity were less likely to be satisfied with school services, as compared to caregivers of children with low autism severity (OR's from 0.45 to 0.39). No significant differences existed in caregiver satisfaction with services between high and low autism severity groups, after addition of caregiver burden to the model. Findings suggest that child's autism severity is a significant predictor of caregiver satisfaction with school services, and should be considered during development of child's Individualized Education Program(IEP) and evaluation of caregiver satisfaction with the IEP.

  8. No effects of a combination of caregivers support group and memory training/music therapy in dementia patients from a memory clinic population.

    Science.gov (United States)

    Berger, Gabriele; Bernhardt, Tanja; Schramm, Uta; Müller, Ruth; Landsiedel-Anders, Susanne; Peters, Juergen; Kratzsch, Tilman; Frolich, Lutz

    2004-03-01

    To evaluate the impact of a combination of caregiver support group and memory training/music therapy in dementia patients on behavioural and psychological symptoms (BPSD) and caregiver burden compared to a control group. Eighteen patient-carer-dyads in the treatment group and 18 patient-carer-dyads as controls were studied in the setting of a memory clinic of a psychiatric university hospital over a period of 2 years. Controls were matched for age, gender, diagnosis, dementia severity, living arrangement and medication. The interventions were conducted once per week for 1 hour run by a clinical psychogeriatric team. Outcome measures were patients' cognitive and functional status as well as BPSD and caregivers subjective burden and depression measured by validated scales. Data were obtained 6, 12 and 24 months after baseline. There were no significant differences between the intervention and control group neither after 6, 12 nor after 24 months treatment. The lack of a positive impact in alleviating caregiver burden or BPSD after intensive psychological interventions may result from extensive care in the routine clinical management including individual counselling for patients and families. The effect of 'treatment as usual' needs to be taken into account when comparing an intervention and control group, as well as the dosage of the intervention. Copyright 2004 John Wiley & Sons, Ltd.

  9. Help for the Caregiver

    Science.gov (United States)

    ... patient needs the caregiver to do, but also what the caregiver is willing and able to do. Caregiver strain ... be caused by the cancer or the treatments. What the caregiver is expected to do Caregivers report that they ...

  10. Stressors of caregivers of school-age children with epilepsy and use of community resources.

    Science.gov (United States)

    Saburi, Gladys

    2011-06-01

    Childhood epilepsy causes multiple stressors, difficulty in adjustment, and disruptions in family relations. This study sought to identify stressors of caregivers of school-age children and to assess whether use of community resources alleviates or contributes to caregiver stress. Stressors refer to concern about the child, communication with healthcare providers, changes in family relationships, interaction with school, and support within the community. A caregiver refers to the person who had looked after the child for the past 6-12 months. Support groups, religious or worship groups, counseling services, and traditional and spiritual faith healers were the community resources that were addressed. Face-to-face interviews were conducted on a convenience sample of 46 caregivers. A three-part structured interview schedule was used to describe demographic data, stressors of caregivers, and use of community resources. The top 6 stressors were the inability to get antiepileptic drugs, the deep pain or sadness caused by the child's seizures, caregiving (which was predominantly by mothers), limited help from the extended family, inadequate information on side effects of drugs, and inadequate information on seizures. The most commonly used community resource was religious or worship groups, with epilepsy support groups being least used. To alleviate caregiver stress, it is important that healthcare providers routinely assess the effect of seizures on caregivers and refer those requiring counseling, advocate for more male and extended family involvement in caregiving and provide adequate information on side effects of drugs and on seizures as standard practice. Nurses in developed countries should incorporate religious activities among complementary and alternative medicine interventions to reduce caregiver stress. Spiritual faith healers should be encouraged to refer clients with epilepsy for drug therapy and counseling.

  11. Urban caregiver empowerment: Caregiver nativity, child asthma symptoms and emergency department use

    Science.gov (United States)

    Coutinho, Maria Teresa; Kopel, Sheryl J.; Williams, Brittney; Dansereau, Katie; Koinis-Mitchell, Daphne

    2016-01-01

    Introduction This study examines the associations between caregiver empowerment, child asthma symptoms, and emergency department use in a sample of school aged urban children with asthma. We examined differences in caregiver empowerment, and in the associations among caregiver empowerment, proportion of days with child asthma symptoms, and emergency department use as a function of caregiver nativity. Methods Participants for this study were part of a larger longitudinal study and included Latino, African American and non-Latino White urban caregivers and their children with asthma (ages 7–9; N=130). Caregiver empowerment was assessed within family, asthma services, and community domains. Results Children whose caregivers reported greater empowerment within the family (knowledge and ability to care for their family) presented with fewer asthma symptoms. Children whose caregivers reported greater empowerment within asthma services (ability to collaborate with asthma providers and healthcare system), presented with more asthma symptoms. Foreign-born caregivers endorsed greater empowerment within the family, while US-born caregivers reported greater empowerment within asthma services. For foreign-born caregivers, higher levels of empowerment in the family were associated with fewer child asthma symptoms. For US-born caregivers, higher levels of empowerment in asthma services were associated with more child asthma symptoms. Discussion Results suggest that caregivers who feel more confident and better able to manage problems within their family may better manage their child's asthma more effectively navigate the asthma healthcare system and manage their child's asthma. PMID:27632543

  12. Caregiver coping with the mentally ill: a qualitative study.

    Science.gov (United States)

    Azman, Azlinda; Jamir Singh, Paramjit Singh; Sulaiman, Jamalludin

    2017-04-01

    Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members. This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members. A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview. The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members. Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers' coping skills.

  13. Schizophrenia in Malaysian families: A study on factors associated with quality of life of primary family caregivers

    Directory of Open Access Journals (Sweden)

    Yi Eng J

    2011-06-01

    Full Text Available Abstract Background Schizophrenia is a chronic illness which brings detrimental effects in the caregivers' health. This study was aimed at highlighting the socio-demographic, clinical and psychosocial factors associated with the subjective Quality of Life (QOL of Malaysian of primary family caregivers of subjects with schizophrenia attending an urban tertiary care outpatient clinic in Malaysia. Methods A cross-sectional study was performed to study patient, caregiver and illness factors associated with the QOL among 117 individuals involved with caregiving for schizophrenia patients. The study used WHOQOL-BREF to assess caregivers' QOL and Brief Psychiatric Rating Scale (BPRS to assess the severity of patients' symptoms. Social Readjustment Rating Scale (SRRS assessed the stress level due to life events. Results The mean scores of WHOQOL-BREF in physical, psychological, social and environmental domains were 66.62 (14.36, 61.32 (15.52, 62.77 (17.33, 64.02 (14.86 consecutively. From multiple regression analysis, factors found to be significantly associated with higher QOL were higher educational level among caregivers in social and environmental domains; caregivers not having medical problem/s in physical and psychological domains; later onset and longer illness duration of illness in social domains; patients not attending day care program in environmental domain; lower BPRS score in physical and environmental domains. SRRS score of caregivers was also found to have a significant negative correlation with QOL in environmental and psychological domains. Other factors were not significantly associated with QOL. Conclusion Caregivers with more social advantages such as higher educational level and physically healthier and dealing with less severe illness had significantly higher QOL in various aspects. Supporting the caregivers in some of these modifiable factors in clinical practice is important to achieve their higher level QOL.

  14. What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries.

    Science.gov (United States)

    Calvó-Perxas, Laia; Vilalta-Franch, Joan; Litwin, Howard; Turró-Garriga, Oriol; Mira, Pedro; Garre-Olmo, Josep

    2018-01-01

    In Europe, informal caregiving is frequent and is expected to grow. Caregiving has an impact on caregivers' health, but its effect may vary according to the policies of support that are available to caregivers. The aim of this study was to assess the association between the policies of support to caregivers available in 12 European countries and the health of caregivers, considering separately the policies based on financial help and those based on training and other non- financial services. We used data from 13,507 caregivers from 12 European countries from the fifth wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) to build a path model. Poor health among caregivers was associated with living in a family-based care country (β = 0.50; 95% CI = 0.42-0.59), and with an increased extent of caregiving (β = 0.18; 95% CI = 0.15-0.22). Non-financial support measures seem to have a larger protective impact (β = -0.33; 95% CI = -0.38 - -0.28) on the health of caregivers than do financial support measures (β = 0.03; 95% CI = 0.01-0.04), regardless of the gender of the caregiver. According to our results, the currently available policies of support associated with better health among caregivers are those that: 1) provide them with some free time, 2) help them to deal emotionally with caregiving, and 3) give them skills to both improve the care situation and to deal with it better.

  15. Pipe support program at Pickering

    International Nuclear Information System (INIS)

    Sahazizian, L.A.; Jazic, Z.

    1997-01-01

    This paper describes the pipe support program at Pickering. The program addresses the highest priority in operating nuclear generating stations, safety. We present the need: safety, the process: managed and strategic, and the result: assurance of critical piping integrity. In the past, surveillance programs periodically inspected some systems, equipment, and individual components. This comprehensive program is based on a managed process that assesses risk to identify critical piping systems and supports and to develop a strategy for surveillance and maintenance. The strategy addresses all critical piping supports. Successful implementation of the program has provided assurance of critical piping and support integrity and has contributed to decreasing probability of pipe failure, reducing risk to worker and public safety, improving configuration management, and reducing probability of production losses. (author)

  16. Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

    Science.gov (United States)

    Dai, Baozhen; Mao, Zongfu; Wu, Bei; Mei, Y John; Levkoff, Sue; Wang, Huali

    2015-01-01

    This study examined the perception of Alzheimer's disease (AD) and caregiving among family caregivers of individuals with mild cognitive impairment (MCI) and AD in China. In-depth semistructured interviews were conducted with 46 family caregivers of individuals with cognitive impairment in 2009 in Wuhan and Beijing, China. Participants included 38 spouses, 7 adult children, and 1 sibling, aged between 41 and 85 years old. The findings showed that all family caregivers thought the Chinese terminology of AD laonian chidai, brought discrimination to individuals with cognitive impairment. Caregivers of individuals with AD experienced burden and desired an increase of formal services. Traditional beliefs of respecting elders and caring for extended family members were held among family caregivers of individuals with cognitive impairment, and there was nearly no difference found between caregivers of AD and those of MCI. It implied that traditional culture provided positive influences on caring for elders with cognitive impairment. An alternative term for MCI may contribute to further reducing the discrimination brought by the old Chinese terminology of AD laonian chidai. Development of formal services for elders with cognitive impairment may contribute to reducing caregivers' worries about future caregiving.

  17. Apoyo social y Carga de la persona cuidadora en una Unidad de Salud Mental Infantil Social support and burden's caregiver in a children's Mental Health Unit

    Directory of Open Access Journals (Sweden)

    José Manuel Perea-Baena

    2009-09-01

    Full Text Available Los cuidados parentales de hijos con trastornos mentales producen estrés y dificultades de afrontamiento en las familias. Muchos estudios han asociado la carga familiar con factores como el apoyo social y dificultades del paciente como problemas de conducta o gravedad del Trastorno. Se realizó un análisis transversal para averiguar la influencia del apoyo social, apoyo familiar y gravedad del trastorno en la sobrecarga de la persona cuidadora. De un total de 96 pacientes, han participado 83 madres y 55 padres. Los resultados muestran mayor sobrecarga en las madres, una relación negativa entre apoyo y sobrecarga y una influencia de la gravedad del trastorno en la sobrecarga.Parental care for a child with mental disorder generates stress and coping difficult. Many studies have associated burden's caregiver with factors such social support and child factor such child behaviour problems and severity of disability. This study employed a cross-sectional design to verify the influence of the social support, family support and severity of disorder in the caregiver's burden. Of a whole of 96 patients, 83 mothers and 55 parents have taken part. Results showed major burden in the mother, a negative relation between social support and burden and an influence of the severity of disorder in caregiver's burden.

  18. Web-based interventions for caregivers of cancer patients: A review of literatures

    Directory of Open Access Journals (Sweden)

    Winnie PY Tang

    2014-06-01

    Full Text Available Diagnosed with cancer is a traumatic event; it does not only affect the diagnosed patients, but also their caregivers. It brings along negative impacts on biopsychosocial health to the caregivers. Supportive interventions are essential for the caregivers to go through the cancer trajectory. In the past, interventions were being delivered in either face-to-face format or delivering written documents. Although Internet becomes a popular platform for delivering interventions given its substantial growth in usage, the effectiveness of this mode of intervention delivery is unclear. The aim of this review is to review existing literatures regarding efficacy of web-based interventions in psychological outcomes of cancer caregivers. A Literature search was performed in December 2012 from seven databases, including, Ovid MEDLINE, EMBASE, PsycINFO, CINHAL, ERIC, British Nursing Index and EBM Reviews. The following keywords were used in the search but were not limited to "paediatric", "parent", "caregiver", "cancer", "web-based", and "psycho education". Totally 4668 citations were identified, after excluding the duplicated and irrelevant citations; finally six studies were included in this review. A review of the literatures identified that the web-based interventions including either online support group only or a combination of informational website and online support group significantly improved coping skills, in a way reduced anxiety, stress, depression, burden, as well as negative mood and perceived bonding in cancer caregivers. It is concluded that a web-based format as a potential platform for delivering intervention to the caregivers of cancer patients for its unique advantage of easy accessibility, and no geographic or time barriers.

  19. Defining effective community support for long-term psychiatric patients according to behavioural principles.

    Science.gov (United States)

    Evans, I M; Moltzen, N L

    2000-08-01

    The purpose of this article is to define the characteristics of effective support in community mental health settings for patients with serious and persistent mental illness. A broad literature providing empirical evidence on competent caregiver behaviours and styles is selectively reviewed. Relevant findings from family caregiver research and studies of social environments that enhance skill development in people with intellectual disabilities are incorporated, within a cognitive-behavioural framework. Six important domains are identified which represent positive caregiver styles: acceptance, creating a positive atmosphere, expectations of change, responsiveness, normalisation and educativeness. The characteristics hypothesised to be critical for caregivers and support workers are defined in a general way that can allow for individualisation according to the goals of the programs and the cultural priorities of staff and patients. Further empirical validation of these characteristics would enable community mental health services to provide more specialised clinical treatments.

  20. Stressors and life goals of caregivers of individuals with disabilities.

    Science.gov (United States)

    Raver, Sharon A; Michalek, Anne P M; Gillespie, Amy M

    2011-01-01

    Caregivers of individuals with disabilities can experience stress as they manage caregiving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed.

  1. [The profile of caregivers to pediatric patients with cystic fibrosis].

    Science.gov (United States)

    Alves, Stella Pegoraro; Bueno, Denise

    2018-05-01

    The scope of this study was to establish the profile of caregivers of pediatric patients diagnosed with Cystic Fibrosis (CF). It was a cross-sectional, descriptive and prospective study in which the caregivers of fibrocystic patients were interviewed during pharmaceutical consultation in a reference center of a University Hospital in southern Brazil. General information was obtained about the caregivers and about their understanding of the disease, drug consumption and dynamics of treatment at home and at school. Seventy-five caregivers were interviewed. Most of them were female, 37.3 years old on average, mothers of the patients who did not work outside the home. Seventy-one caregivers declared difficulties in drug acquisition and patient support associations were highlighted as the main alternative to avoid the interruption of treatment. Another fact observed was the overload of the caregiving process on the shoulders of only one caregiver resulting in social and economic impacts and changes to the family's daily routine. This fact emphasizes the need of intervention by a qualified multidisciplinary team to identify and alleviate difficulties, investing in interpersonal relations and administering care.

  2. Reiki training for caregivers of hospitalized pediatric patients: A pilot program☆

    Science.gov (United States)

    Kundu, Anjana; Dolan-Oves, Rebecca; Dimmers, Martha A.; Towle, Cara B.; Doorenbos, Ardith Z.

    2013-01-01

    To explore the feasibility of a Reiki therapy-training program for the caregivers of pediatric medical or oncology inpatients, at a large pediatric hospital, a series of Reiki training classes were offered by a Reiki Master. At completion of the training, an interview was conducted to elicit participant’s feedback regarding the effectiveness and feasibility of the training program. Seventeen of the 18 families agreed to participate. Most families (65%) attended three Reiki training sessions, reporting that Reiki benefitted their child by improving their comfort (76%), providing relaxation (88%), and pain relief (41%). All caregivers identified becoming an active participant in their child’s care as a major gain from participation in the Reiki training. A hospital-based Reiki training program for caregivers of hospitalized pediatric patients is feasible and can positively impact patients and their families. More rigorous research regarding the benefits of Reiki in the pediatric population is needed. PMID:23337565

  3. Resilience in Caregivers of Partners With Young Onset Dementia: A Concept Analysis.

    Science.gov (United States)

    Kobiske, Karie R; Bekhet, Abir K

    2018-05-01

    Over 200,000 Americans diagnosed with young onset dementia (YOD), dementia diagnosed prior to age 65, are cared for by family members. This can be costly to caregivers' physical and psychological health. Some adapt well to the caregiver role and are said to be resilient. Aim/Question: This paper builds on current understanding of the concept of resilience and applies this to caregivers of partners diagnosed with YOD. Concept analysis. Resilient caregivers exhibit attributes including determination, flexibility, positive thinking, self-efficacy, resourcefulness, social support and spirituality. YOD affects caregiver's health. Much research has been done on interventions for dementia caregivers. These interventions do not necessarily meet the needs of YOD caregivers as they do not account for dynamics in the family. By recognizing what is resiliency in YOD caregivers, interventions can be developed that focus on characteristics that build these attributes. Understanding the concept of resilience related to caregiving for a partner diagnosed with YOD allows for future development, measurement, and evaluation of nursing interventions. Nursing staff are in a strategic position to provide effective interventions to enhance resilience among caregivers of YOD.

  4. Determinants of depression in primary caregivers of disabled older relatives: a path analysis

    Directory of Open Access Journals (Sweden)

    Rafael del -Pino-Casado

    2017-11-01

    Full Text Available Abstract Background Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives. Methods Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200 was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression. Results Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure and an internal obligation (beliefs of obligation; (b our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

  5. Burden Experienced by Family Caregivers of Patients at the End of Life: What do General Practice Teams Offer?

    Science.gov (United States)

    Krug, K; Bölter, R; Ballhausen, R A; Engeser, P; Peters-Klimm, F

    2016-09-01

    The aim of the study: was to determine how far general practice teams are prepared to relieve family caregivers of palliative patients from their caregiving burden, the support they actually offer, and where they identify needs for improvement. Method: Focus groups and interviews on the issues of identification and support of family caregivers were conducted with practice teams (general practitioners, GPs, and medical assistants, MAs) and the results qualitatively analyzed. Results: 21 participants (14 GPs, 7 MAs) from 13 practices identified burdened family caregivers, thereupon offered support and provided contact details to local consultation services. They suggested to family caregivers that they should use their social network to create room for meeting their own needs. Conclusions: Practice teams use a multitude of individualized and unsystematic approaches to support family caregivers. In further studies within the framework of this project, systematic approaches will be identified and tried out. © Georg Thieme Verlag KG Stuttgart · New York.

  6. Anxiety, stress and depression in family caregivers of the mentally ill

    OpenAIRE

    Lídia Cabral; João Duarte; Manuela Ferreira; Carlos dos Santos

    2014-01-01

    Background: The current policy guidelines on mental health aim to keep the mentally ill within the community, with the development of social support, including families, hence the emergence of the role of the family caregiver. Objectives: To identify socio-demographic variables influencing anxiety, depression and stress for the informal caregivers of the mentally ill; to determine the influence of family background variables on caregiver anxiety, depression and stress; to analyse the relat...

  7. Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

    Science.gov (United States)

    Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

    2016-03-01

    To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and

  8. [The system of informal caregiving as inequality].

    Science.gov (United States)

    García-Calvente, María del Mar; Mateo-Rodríguez, Inmaculada; Eguiguren, Ana P

    2004-05-01

    In our setting, it is families, not the health and social services, who play the greatest role in providing continuous care to persons in need of such services. Informal health care poses two key questions with regard to the issue of equity: differences in the burdens borne by men and women, which contribute to gender inequality and, depending on their educational and socio-economic level, inequities in their ability to choose and gain access to needed resources and support services, thus contributing to social class inequalities. Distributing the burden of caregiving between men and women, and between the family and the state, constitutes a crucial debate in public health. This study analyzes the concept and characteristics of informal care, provides data on its dimensions in our setting, and analyzes the profile of caregivers, as well as the work they do and the impact it has on their lives. Finally, it presents currently existing models and support strategies for informal caregivers. It is largely women who assume the principal role of providing informal care, undertaking the most difficult and demanding tasks and dedicating the largest share of their time to them. As a result, women bear an elevated cost in their lives in terms of health, quality of life, access to employment and professional development, social relations, availability of time for themselves, and economic repercussions. Unemployed, under-educated women from the least privileged social classes constitute the largest group of informal caregivers in our country. Any policies aimed at supporting those who provide such care should keep in mind the unequal point from which they start and be evaluated in terms of their impact on gender and social class inequality.

  9. A Customized Intervention for Dementia Caregivers: A Quasi-Experimental Design.

    Science.gov (United States)

    Wawrziczny, Emilie; Larochette, Clotilde; Papo, David; Constant, Emilie; Ducharme, Francine; Kergoat, Marie-Jeanne; Pasquier, Florence; Antoine, Pascal

    2018-04-01

    The aim of this study is to test the effects of a customized intervention on distress among caregivers of persons with dementia (PWD) using a quasi-experimental design. Fifty-one spouse caregivers in the experimental group and 51 in the control group participated in the study. The effects of the intervention were examined by comparing caregivers' responses with questionnaires at pre-intervention baseline (T0) and immediately after intervention (T1). Differences were quantified using repeated-measures ANOVA. The analyses indicated a stabilizing effect of the intervention on caregivers' perceptions of PWD's daily functioning, self-esteem related to caregiving, quality of family support, and feeling of distress. Linear increases were observed regarding sense of preparedness and impact on daily routine, while no differences (interaction and linear effects) were observed for degree of self-efficacy, depression, impact on finances, or self-rated health. These findings show a preliminary efficacy of the intervention proposed in this study to prevent the exacerbation of caregivers' distress.

  10. Brief Report: Caregiver Strategy Implementation--Advancing Spoken Communication in Children Who Are Minimally Verbal

    Science.gov (United States)

    Shire, Stephanie Y.; Shih, Wendy; Kasari, Connie

    2018-01-01

    Research has demonstrated that caregivers' use of intervention strategies can support their children's social engagement and communication. However, it is not clear to what degree caregivers must master the strategies to effectively support gains in social communication, specifically, core challenges such as joint attention language (comments).…

  11. Military Caregivers: Cornerstones of Support for Our Nation’s Wounded, Ill, and Injured Veterans

    Science.gov (United States)

    2013-01-01

    was critically important to them. One caregiver said, “There has to be more of caregivers coming together to have wine , or have a cry or have...Schell, L. H. Jaycox, and T. Tan - ielian, “Epidemiology of Trauma Events and Mental Health Out- comes Among Service Members Deployed to Iraq and

  12. The education of family caregivers as an ethical issue.

    Science.gov (United States)

    Pennacchini, M; Tartaglini, D

    2014-01-01

    Family caregiving represents the first and predominant source of care for 75% to 80% of people with chronic illness in industrialized countries. They have a fundamental role in assisting, providing care, and support to their relatives throughout all the history of the illness. Despite the significant value of informal caregiving, studies consistently report unmet needs among informal caregivers, particularly with regard to obtaining the information and education necessary to care for an older adult experiencing a chronic health condition. Health care professionals talk to patients and their relatives about their disease and about how to manage them daily, forgetting to consider the healthy component that still accompanies their disease though to differing degrees. In the twentieth century some philosophers highlighted that health is still very frequently a hidden asset, an asset that human beings forget not only to possess, but mostly to guard. This paper argues that the family can be an entity responsible not only for the treatment and care of a sick person, but also to building the health of this and the other members Family caregivers can build families capable of "building health" even when caring for a chronically ill. Therefore the education of family caregivers is an important ethical issue. Health care providers should be supportive of family caregivers and help them acquire knowledge and skills in order to maximize quality care. In addition, it is very important that family caregivers: 1. acquire the ability to direct the family's attitude to the enhancement of the health of a sick person, 2. lead the family and not just the sick person to have an adequate and proper life style in order to manage both his/her pathology and his/her health; 3. contribute to improve the quality of life both of the patient and of the family considered as a "unit of care"

  13. Family caregivers of patients with frontotemporal dementia: An integrative review.

    Science.gov (United States)

    Caceres, Billy A; Frank, Mayu O; Jun, Jin; Martelly, Melissa T; Sadarangani, Tina; de Sales, Paloma Cesar

    2016-03-01

    The purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers' health and well-being, and (3) identify coping strategies used by family caregivers. Frontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia. An integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles. Findings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful. Family caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique

  14. The Stress of Sadness: The Most Stressful Symptoms for Hospice Family Caregivers.

    Science.gov (United States)

    Ratkowski, Kristy L; Washington, Karla T; Craig, Kevin W; Albright, David L

    2015-11-01

    A family member or friend is often a hospice patient's primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike. © The Author(s) 2014.

  15. CAREGIVER BURDEN AMONG PEOPLE CARING FOR PATIENTS WITH SCHIZOPHRENIA

    Directory of Open Access Journals (Sweden)

    Shivani Bansal

    2017-04-01

    Full Text Available BACKGROUND Caregivers of patients suffering from mental illness report burden in different areas including effects on family functioning, psychological problems, financial problems and health. The aim of the study is to determine the sociodemographic profile and caregiver burden among caregivers of persons with schizophrenia and to study the effect of patients’ psychopathology on caregiver burden scale. MATERIALS AND METHODS The present study was conducted in the Psychiatry Department, Government Medical College, Amritsar. A sample size of 34 was taken who were primary caregivers (preferably parents or spouse of schizophrenia patients diagnosed using ICD10. Measures included caregiver’s demographic variables and caregiver’s burden using the Zarit burden interview and PANSS scale in patients. Statistical Analysis- Data was analysed using SPSS software version 21. RESULTS The mean age of the caregiver was 42 SD (12.16 years. The majority of the caregivers were parents, married and employed. The mean average score of the responses to Zarit burden interview was (SD=59.52 ± 20.92. Majority of the caregivers experienced severe burden (52.9%, 9 (26.4% caregivers had reported moderate burden and 6 (17.6% had reported mild burden. The mean duration of illness was 6.89 (SD=5.03 years. The level of burden experienced was significantly associated with total PANSS score, negative symptoms, positive symptoms, general psychopathology score and duration of schizophrenia illness (p=0.00. CONCLUSION There is need for psychological assistance and social support for the vulnerable caregivers to help them reduce the burden levels and employ positive coping strategies.

  16. Caregivers of older persons with multiple sclerosis: determinants of health-related quality of life.

    Science.gov (United States)

    Buhse, Marijean; Della Ratta, Carol; Galiczewski, Janet; Eckardt, Patricia

    2015-04-01

    This study was conducted to determine which factors (clinical and demographic) are associated with mental and physical health-related quality of life (HRQOL) for caregivers of older persons with multiple sclerosis (MS). The Andersen's Healthcare Utilization Model guided this study. Knowledge of identified predictors of HRQOL may prompt nurses who care for persons with MS to address these issues and provide supportive care. A cross-sectional descriptive design was used to examine the relationship between patient with MS and caregiver clinical and demographic factors with caregiver physical and mental HRQOL. Patients with MS aged 60 years or older and their caregivers from four MS centers on Long Island, New York, self-selected into this study (n = 102). A caregiver survey was administered that collected demographic information and included validated questionnaires measuring HRQOL, caregiver burden, and caregiver perception of risk for neuropsychological impairment of patients with MS. Patient surveys collected demographic information and validated questionnaires measuring cognition, depression, and disability. Multivariate linear regression was used to examine patient and caregiver variables to explain caregiver physical and mental HRQOL. The caregivers in this study were older (mean age = 61 years) with existing comorbidities. We found that caregiver mental HRQOL was negatively associated with patient depression and, surprisingly, positively associated with caregiver burden and caregiver comorbidity of heart disease. Caregiver physical HRQOL was negatively associated with caregiver comorbidities of arthritis and diabetes and lower household income. The challenges older caregivers face when caring for older persons with MS have been shown to affect their mental and physical QOL. Nurses who care for older patients with MS will increasingly rely on older caregivers to provide patient-centered interventions. This descriptive study, based on the Anderson theoretical

  17. A year-long caregiver training program improves cognition in preschool Ugandan children with human immunodeficiency virus.

    Science.gov (United States)

    Boivin, Michael J; Bangirana, Paul; Nakasujja, Noeline; Page, Connie F; Shohet, Cilly; Givon, Deborah; Bass, Judith K; Opoka, Robert O; Klein, Pnina S

    2013-11-01

    To evaluate mediational intervention for sensitizing caregivers (MISC). MISC biweekly caregiver training significantly enhanced child development compared with biweekly training on health and nutrition (active control) and to evaluate whether MISC training improved the emotional well-being of the caregivers compared with controls. Sixty of 120 rural Ugandan preschool child/caregiver dyads with HIV were assigned by randomized clusters to biweekly MISC training, alternating between home and clinic for 1 year. Control dyads received a health and nutrition curriculum. Children were evaluated at baseline, 6 months, and 1 year with the Mullen Early Learning Scales and the Color-Object Association Test for memory. Caldwell Home Observation for Measurement of the Environment and videotaped child/caregiver MISC interactions also were evaluated. Caregivers were evaluated for depression and anxiety with the Hopkins Symptoms Checklist. Between-group repeated-measures ANCOVA comparisons were made with age, sex, CD4 levels, viral load, material socioeconomic status, physical development, and highly active anti-retroviral therapy treatment status as covariates. The children given MISC had significantly greater gains compared with controls on the Mullen Visual Reception scale (visual-spatial memory) and on Color-Object Association Test memory. MISC caregivers significantly improved on Caldwell Home Observation for Measurement of the Environment scale and total frequency of MISC videotaped interactions. MISC caregivers also were less depressed. Mortality was less for children given MISC compared with controls during the training year. MISC was effective in teaching Ugandan caregivers to enhance their children's cognitive development through practical and sustainable techniques applied during daily interactions in the home. Copyright © 2013 Mosby, Inc. All rights reserved.

  18. A Phase I Feasibility Study of Yoga on the Physical Health and Coping of Informal Caregivers

    Directory of Open Access Journals (Sweden)

    Marieke Van Puymbroeck

    2007-01-01

    Full Text Available Family and friends who provide unpaid care to an individual with a disease or disability (known as informal caregivers experience numerous threats to their physical health as a result of providing care. In spite of evidence that participation in physical and leisure activities can be health promoting, informal caregivers have reported diminished or completely absent leisure participation. Hatha yoga has documented therapeutic benefits, including reduced anxiety, as well as improved muscle strength and endurance and flexibility. The purpose of this study was to determine the feasibility of conducting an 8-week yoga program with informal caregivers, and to gather pilot data on the effects of yoga on the physical fitness and coping of informal caregivers. Caregivers were randomized into a yoga intervention (n = 8 or control group (n = 9. The yoga sessions were 2.5 hours/week for 8 weeks and consisted of a variety of pranayama (breathing and asana (postures activities and were led by a certified yoga instructor. Four caregivers (two in each group dropped out of the study. After the conclusion of the 8-week yoga program, lower body strength increased significantly for those in the yoga group and other notable trends occurred in terms of coping, upper body strength and aerobic endurance. Caregivers in the control group experienced an unexpected increase in lower body flexibility. These findings indicate that caregivers in a yoga program may receive some benefits. Future studies are encouraged to test the efficacy of yoga as an intervention for caregivers.

  19. Late-Stage Caregiving

    Science.gov (United States)

    ... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

  20. Middle-State Caregiving

    Science.gov (United States)

    ... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

  1. Early-Stage Caregiving

    Science.gov (United States)

    ... Caregiving Middle-Stage Caregiving Late-Stage Caregiving Behaviors Aggression & Anger Anxiety & Agitation Depression Hallucinations Memory Loss & Confusion Repetition Sleep Issues & Sundowning Suspicion & Delusions Wandering Abuse Start Here What You Need to Know Online ...

  2. Site Support Program Plan Infrastructure Program

    International Nuclear Information System (INIS)

    1995-01-01

    The Fiscal Year 1996 Infrastructure Program Site Support Program Plan addresses the mission objectives, workscope, work breakdown structures (WBS), management approach, and resource requirements for the Infrastructure Program. Attached to the plan are appendices that provide more detailed information associated with scope definition. The Hanford Site's infrastructure has served the Site for nearly 50 years during defense materials production. Now with the challenges of the new environmental cleanup mission, Hanford's infrastructure must meet current and future mission needs in a constrained budget environment, while complying with more stringent environmental, safety, and health regulations. The infrastructure requires upgrading, streamlining, and enhancement in order to successfully support the site mission of cleaning up the Site, research and development, and economic transition

  3. Factors Related to Perceived Needs of Primary Caregivers of Patients with Schizophrenia

    Directory of Open Access Journals (Sweden)

    Ling-Ling Yeh

    2008-08-01

    Conclusion: Four clusters of caregivers' perceived needs were identified and found to be related to psychopathologic and demographic factors. These data are of value in designing appropriate community psychiatric programs to improve the quality of care and enhance the capacity of primary caregivers to care for patients.

  4. Family caregivers' attributions about care-recipient behaviour: does caregiver relationship satisfaction mediate the attribution-distress relationship?

    Science.gov (United States)

    Hui, Siu-Kuen Azor; Elliott, Timothy R; Martin, Roy; Uswatte, Gitendra

    2011-09-01

    The relations of caregiver attributions about care-recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. This is a cross sectional study. Seventy-five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care-recipients' problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Caregivers' explanations about care-recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers. ©2010 The British Psychological Society.

  5. Caregiving of aged people, either professional job or acquiring merit in God's sight: an example of qualitative research.

    Science.gov (United States)

    Cankurtaran Őntaş, Ozlem; Tunç, Melike

    2012-01-01

    Nowadays because of lots of reasons, lifespan is increasing and caregiving of aged people becomes more and more important. Today it is understood how the professional care of aged people is significant, instead of being carried out by volunteers. Because of this, in this study we aimed to understand the problems, and thoughts of aging of caregivers who are working in nursing homes. This study was made using the so-called qualitative research, which is one of the research designs. Including general aim, interviews with 13 caregivers with structured questions, supported by spontaneous ones. Interviews were taped and transcribed verbatim. After that, they were grouped with the same themes. Thoughts are grouped with three main themes, which are about "aging", "working life", "caregiving of aged people". Aged people are described like people who are dependent, need interest, and represent the wisdom period. Also caregiving is described like both good job and punishment. Besides, the reason of working as a caregiver, is the economic needs. The suggestions of caregivers are increasing payment, giving psychological and emotional support, and also improving physical conditions. Economic satisfaction of caregivers, giving psychological support, caregivers with aged people and improving physical conditions are important to increase the quality of professional caregiving. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  6. Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury.

    Science.gov (United States)

    Farajzadeh, Ata; Akbarfahimi, Malahat; Maroufizadeh, Saman; Rostami, Hamid Reza; Kohan, Amir Hassan

    2018-02-01

    To investigate the psychometric properties of the Persian version of Caregiver Burden Scale (CBS) in caregivers of patients with spinal cord injury. This is a cross-sectional study. After a forward-backward translation, the CBS was administered to 110 caregivers of patients with spinal cord injury (men = 60, women = 50). Factor structure was evaluated by confirmatory factor analysis. The Internal consistency and test-retest reliability of the CBS were examined using Cronbach's α and the intraclass correlation coefficient, respectively. Construct validity was assessed by examining the relationship among CBS and the World Health Organization Quality of Life, and the Beck Depression Inventory. The results of confirmatory factor analysis provided support for a five-factor model of CBS. All subscales of CBS revealed acceptable internal consistency (0.698-0.755), except for environment subscale (0.559). The CBS showed adequate test-retest reliability for its subscales (0.745-0.900). All subscales of CBS significantly correlated with both Beck Depression Inventory and World Health Organization Quality of Life, confirming construct validity. The Persian version of the CBS is a valid and reliable measure for assessing burden of care in caregivers of patients with spinal cord injury. Implications for Rehabilitation Spinal cord injury leads to depression, high levels of stress and diminished quality of life due to the high physical, emotional, and social burdens in caregivers. Persian version of the Caregiver Burden Scale is a valid and reliable tool for assessing burden in Iranian caregivers of patients with spinal cord injury.

  7. "It still haunts me whether we did the right thing": a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers.

    Science.gov (United States)

    Harrop, Emily; Morgan, Fiona; Byrne, Anthony; Nelson, Annmarie

    2016-11-08

    Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.

  8. VA Caregiver Support

    Science.gov (United States)

    ... Accountability & Whistleblower Protection Transparency Media Room Inside the Media Room Public Affairs News Releases Speeches Videos Publications National Observances Veterans Day Memorial Day Celebrating America's Freedoms Special Events Adaptive Sports Program Creative Arts Festival ...

  9. Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer

    Science.gov (United States)

    2013-01-01

    Background This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges. Methods Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi’s (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled ‘hope against hope.’ Results The journal entries highlighted: the caregivers’ hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and ‘hope against hope’ describes how hope persists even when there is no hope for a cure. Conclusions This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers. PMID:24341372

  10. Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality

    Directory of Open Access Journals (Sweden)

    Usha Chivukula

    2018-01-01

    Full Text Available Background: When a child is diagnosed with cancer the parents as caregivers experience severe anxiety, trauma, ambiguity, and grief. Caregivers of cancer patients thus deal with the management of their own psychological distress along with the child's illness.Aim: Coping plays a crucial role in improving the caregivers' physical and emotional well-being. Spirituality is an important means of consolation, strength, and emotional support during this phase. The present study aims to investigate the impact of coping and spirituality on caregiver burden.Methods: A total of 100 caregivers of children between the age group of 3–11 years, diagnosed with acute lymphoblastic leukemia were the participants of the study. The participants were recruited from cancer hospitals in Hyderabad. The study adopted a between-group design to find out if mothers and fathers differed in their coping strategies, spirituality, and caregiver burden. The study also adopted a correlation design to find the relationship between coping, spirituality, and caregiver burden. Descriptive statistics and multiple linear regression analysis were conducted to identify if coping and spirituality predict caregiver burden.Results: The results showed no significant difference in the burden experienced by both mothers and fathers; however, mothers and fathers used different coping strategies and differed on the dimensions of spirituality. The results of multiple linear regression indicated that dimensions of coping and spirituality were significant predictors of caregiver burden.Conclusion: Cancer in the child impacts the parent's burden but providing sufficient support and implementing effective coping strategies, will help in mitigating the intensity of caregiver burden. It is essential that the hospital authorities and policymakers understand that a professional health psychologist could be a liaison between the doctor, patient, and the caregiver in bringing down the levels of burden

  11. "It's like we're grasping at anything": caregivers' education needs and preferred learning methods.

    Science.gov (United States)

    Mastel-Smith, Beth; Stanley-Hermanns, Melinda

    2012-07-01

    In this qualitative descriptive study, we explored caregivers' educational needs and preferred methods of information delivery. Descriptions are based on five focus groups (N = 29) conducted with ethnically diverse, current and past family caregivers, including those who had previously attended a structured educational program. Themes arose from verbatim data transcriptions and coded themes. Four categories of educational needs were identified: (a) respite, (b) caregiving essentials, (c) self-care, and (d) the emotional aspects of caregiving. Advantages and disadvantages of learning methods are discussed, along with reasons for and outcomes of attending caregiver workshops. An informed caregiver model is proposed. Health care providers must assess educational needs and strive to provide appropriate information as dictated by the care recipient's condition and caregiver's expressed desires. Innovative methods of delivering information that are congruent with different caregiving circumstances and learning preferences must be developed and tested.

  12. Challenges and Strategies for Hospice Caregivers: A Qualitative Analysis.

    Science.gov (United States)

    Oliver, Debra Parker; Demiris, George; Washington, Karla T; Clark, Carlyn; Thomas-Jones, Deborah

    2017-08-01

    Family caregivers of hospice patients are responsible for the day-to-day care of their loved ones during the final months of life. They are faced with numerous challenges. The purpose of this study was to understand the challenges and coping strategies used by hospice caregivers as they care for their family members. This study is a secondary analysis of data from an attention control group in a large randomized controlled trial testing a cognitive behavioral intervention with hospice caregivers. Audiotaped interviews were coded with initial themes and combined into final categories of caregiving challenges and strategies for managing the hospice caregiving experience. Caregivers shared narratives discussing challenges that included their frustrations with patient care issues, emotional challenges, frustrations with various health care systems, financial problems, and personal health concerns. They also discussed coping strategies involving patient care, self-care, and emotional support. The coping techniques were both problem and emotion based. There is a need for interventions that focus on strengthening both problem-based and emotional-based coping skills to improve the caregiving experience. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  13. Linking theory with qualitative research through study of stroke caregiving families.

    Science.gov (United States)

    Pierce, Linda L; Steiner, Victoria; Cervantez Thompson, Teresa L; Friedemann, Marie-Luise

    2014-01-01

    This theoretical article outlines the deliberate process of applying a qualitative data analysis method rooted in Friedemann's Framework of Systemic Organization through the study of a web-based education and support intervention for stroke caregiving families. Directed by Friedemann's framework, the analytic method involved developing, refining, and using a coding rubric to explore interactive patterns between caregivers and care recipients from this 3-month feasibility study using this education and support intervention. Specifically, data were gathered from the intervention's web-based discussion component between caregivers and the nurse specialist, as well as from telephone caregiver interviews. A theoretical framework guided the process of developing and refining this coding rubric for the purpose of organizing data; but, more importantly, guided the investigators' thought processes, allowing them to extract rich information from the data set, as well as synthesize this information to generate a broad understanding of the caring situation. © 2013 Association of Rehabilitation Nurses.

  14. Psychological Trauma and LGBT Caregivers: A Conceptual Framework to Guide Practice.

    Science.gov (United States)

    Glaesser, Richard S; Patel, Bina R

    2016-01-01

    LGBT adults face unique risk factors such as social isolation, discrimination, and victimization, and occasionally th ey engage in detrimental behaviors like high alcohol and drug use and risky sexual activity that negatively impacts psychological/physical health. These risks can affect their overall health and stress the relationship with an older caregiver/recipient-partner following exposure to acute medical event. The experience of an acute medical event among a LGBT caregiving partner can result in psychological trauma. In this article the authors present a conceptual framework involving stress process theory, life course theory, and family systems perspective to understand the effect of stressors on LGBT caregiving partners. Implications for social work practice include assessing, coordinating care, counseling and negotiating services at micro level, engaging family-centered approaches to support positive transition to caregiving role at mezzo level, and advocating for policy and cultural shifts to supports and diminish stigma of this group.

  15. Web-based health interventions for family caregivers of elderly individuals: A Scoping Review.

    Science.gov (United States)

    Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I

    2017-07-01

    For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of

  16. Dementia service centres in Austria: A comprehensive support and early detection model for persons with dementia and their caregivers - theoretical foundations and model description.

    Science.gov (United States)

    Auer, Stefanie R; Span, Edith; Reisberg, Barry

    2015-07-01

    Despite the highly developed social services in Austria, the County of Upper Austria, one of the nine counties of Austria had only very limited specialized services for persons with dementia and their caregivers in 2001. Support groups existed in which the desire for more specialized services was voiced. In response to this situation, funding was received to develop a new structure for early disease detection and long term support for both the person with dementia and their caregivers. This article describes the development of the model of the Dementia Service Centres (DSCs) and the successes and difficulties encountered in the process of implementing the model in six different rural regions of Upper Austria. The DSC was described in the First Austrian Dementia Report as one of the potential service models for the future. © The Author(s) 2013.

  17. Quality of life and coping strategies of caregivers of children with physical and mental disabilities

    Directory of Open Access Journals (Sweden)

    Deepak Ganjiwale

    2016-01-01

    Full Text Available Background: Developmental disability is a term that refers to permanent cognitive and or physical impairment. Arrested development of physical or mental capacities can lead to number of problems for the sufferer as well as the carers. Methodology: This study was conducted to assess the quality of life (QOL and coping mechanisms used by the carers of physically challenged children. In this cross-sectional study, all the 116 children from a school for children with special needs in Anand, Gujarat and their carers were included. World Health Organization-QOL (WHO-QOL and BREF COPE were administered to measure QOL and coping strategies, respectively. Results: On WHO-QOL, the social relationship domain was observed to be the best while environment domain had the lowest score. The main coping style used by the caregivers was Active emotional coping. Conclusions: Significant differences were found in QOL of the caregivers of physically challenged children based on the type of disability of the child. Rehabilitation programs can be planned to provide psychological support to the caregivers to ease the burden if any through collaborative efforts.

  18. Death Anxiety and Quality of Life in Iranian Caregivers of Patients With Cancer.

    Science.gov (United States)

    Soleimani, Mohammad Ali; Lehto, Rebecca H; Negarandeh, Reza; Bahrami, Nasim; Chan, Yiong Huak

    Concerns about death may alienate and negatively impact communication among family members of patients with life-threatening illness. Little is known about the relationship of death anxiety to quality of life in cancer family caregivers. The aim of this study was to examine relationships between sociodemographic and patient-related factors, social support, and religiosity with death anxiety and quality of life in Iranian cancer family caregivers. Three hundred thirty family caregivers from an urban regional cancer institute in Iran participated in a descriptive-correlational study that incorporated sociodemographic surveys and validated death anxiety (Templer Scale) and Quality of life (Family Version) instruments. Caregivers reported moderate levels of death anxiety and decrements in QOL. Quality of life was inversely associated with death anxiety (r = -0.30, P quality of life. Death anxiety is associated with lowered quality of life in Iranian family caregivers. Multiple factors may impact death anxiety and quality of life relevant to the socioreligious milieu. Addressing concerns that increase death anxiety may improve quality of life and lower stress associated with adapting to the family caregiver role. Caregiving responsibilities, added to challenges associated with personal, family, and professional life, impact multiple aspects of QOL. As nurses increasingly care for patients from diverse backgrounds, it becomes more imperative that support for family caregivers that promotes psychological adaptation and quality of life is needed.

  19. Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time.

    Science.gov (United States)

    Boele, Florien W; van Uden-Kraan, Cornelia F; Hilverda, Karen; Weimer, Jason; Donovan, Heidi S; Drappatz, Jan; Lieberman, Frank S; Verdonck-de Leeuw, Irma; Sherwood, Paula R

    2017-08-01

    Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

  20. Family Caregiver Alliance

    Science.gov (United States)

    ... on your schedule. Look for our launch soon! FAMILY CARE NAVIGATOR ─ Click on Your State AL AK ... AiA18 Smart Patients Caregivers Community In partnership with Family Caregiver Alliance Learn more Caregiver Research Studies show ...

  1. Positive Aspects of Caregiving and Its Correlates among Caregivers of Bipolar Affective Disorder.

    Science.gov (United States)

    Grover, S; Kate, N; Chakrabarti, S; Avasthi, A

    2017-12-01

    To evaluate the positive aspects of caregiving and its correlates (socio-demographic and clinical variables, caregiver burden, coping, quality of life, psychological morbidity) in the primary caregivers of patients with bipolar affective disorder (BPAD). A total of 60 primary caregivers of patients with a diagnosis of BPAD were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE) and the Hindi version of Involvement Evaluation Questionnaire, Family Burden Interview Schedule (FBIS), modified Hindi version of Coping Checklist, shorter Hindi version of the World Health Organization Quality of Life (WHOQOL-BREF), and Hindi translated version of 12-item General Health Questionnaire (GHQ-12). Caregivers of patients with BPAD had the highest mean score in the SPACE domain of Motivation for caregiving role (2.45), followed by Caregiver satisfaction (2.38) and Caregiving personal gains (2.20). The mean score was the lowest for the domain of Self-esteem and social aspect of caring (2.01). In terms of correlations, age of onset of BPAD had a negative correlation with various domains of SPACE. The mean number of total lifetime affective and depressive episodes correlated positively with Self-esteem and social aspect of caring. Caregiver satisfaction correlated negatively with FBIS domains of Disruption of routine family activities, Effect on mental health of others, and subjective burden. Coercion as a coping mechanism correlated positively with domains of Caregiving personal gains, Caregiver satisfaction, and the total score on SPACE. Three (Physical health, Psychological health, Environment) out of 5 domains of the WHOQOL-BREF correlated positively with the total SPACE score. No association was noted between GHQ-12 and SPACE scores. Positive caregiving experience in primary caregivers of patients with BPAD is associated with better quality of life of the caregivers.

  2. Family medical leave as a resilience resource for family caregivers.

    Science.gov (United States)

    Swanke, Jayme; Zeman, Laura Dreuth

    2009-01-01

    Case managers mobilize family networks to care for patients. Family medical leave can be a resource for case managers who seek to enhance resilience among family caregivers. The Family Medical Leave Act, passed in 1993, was the first U.S. policy to regulate employee leaves from work for family care purposes (29 CFR 825.102). This policy offers family caregivers increased flexibility and equality. Current and emerging policies also can reduce financial strain. The discussion examines how case managers can integrate family medical leave into best-practice models to support patients and family caregivers.

  3. Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s.

    Science.gov (United States)

    Graessel, Elmar; Berth, Hendrik; Lichte, Thomas; Grau, Hannes

    2014-02-20

    Subjective burden is a central variable describing the situation encountered by family caregivers. The 10-item short version of the Burden Scale for Family Caregivers (BSFC-short/BSFC-s) was developed to provide an economical measure of this variable. The present study examined the reliability and validity of the BSFC-s. Comprehensive data from "the IDA project" were the basis of the calculations, which included 351 dyads and examined medical data on people with dementia, interview data from their family caregivers, and health insurance data. A factor analysis was performed to explore the structure of the BSFC-s; Cronbach's alpha was used to evaluate the internal consistency of the scale. The items were analyzed to determine the item difficulty and the discriminatory power. Construct validity was tested with five hypotheses. To establish the predictive validity of the BSFC-s, predictors of institutionalization at a follow-up time of 2.5 years were analyzed (binary logistic regression). The BSFC-s score adhered to a one-factor structure. Cronbach's alpha for the complete scale was .92. A significant increase in the BSFC-s score was observed when dementia progressed, disturbing behavior occurred more frequently, care requirements increased, and when caregivers were diagnosed with depression. Caregiver burden was the second strongest predictor of institutionalization out of a total of four significant predictors. All hypotheses that referred to the construct validity were supported. The BSFC-short with its ten items is a very economical instrument for assessing the caregiver's total subjective burden in a short time frame. The BSFC-s score has predictive validity for the institutionalization of people with dementia. Therefore it is an appropriate outcome measure to evaluate caregiver interventions. The scale is available for free in 20 languages (http://www.caregiver-burden.eu). This availability facilitates the comparison of international research findings.

  4. Effects of Participation in Support Groups on Alzheimer’s Family Caregivers’ Strain and Spiritual Wellbeing

    Directory of Open Access Journals (Sweden)

    Farahnaz Mohammadi

    2011-04-01

    Full Text Available Objectives: Since support for family caregivers is crucial in providing care for elderly, this study was conducted to examine the effects of participation in support groups on Alzheimer’s family caregivers’ strain and spiritual wellbeing. Materials and Methods & Materials: In this semi-experimental study, 32 accessible family caregivers of elderly patients with Alzheimer who had at least one year of experience participated. The intervention consisted of a 4-month active participation in educational and emotional supportive sessions related to patient and caregivers care management. At the end of the intervention, the leadership of the groups was transferred to members of the groups. These sessions were conducted in 3 public centers in the community. Caregivers were assessed by caregiving strain and spiritual wellbeing questionnaires at the beginning, at the end of the intervention and 2 months later. Data was analyzed by ANOVA with repeated measurement. P<0.05 was considered statistically significant. Results: In general, 32 accessible family caregivers of elderly Alzheimer patients with at least one year of experience participated in this study. The mean of spiritual wellbeing through three mentioned measurements showed an improvement (26.029, 34.029, 34.471, whereas the care giving strain showed a decreasing trend (40.118, 32.706, 31.265. Findings based on ANOVA-repeated measurement revealed a significantly decrease in care giving strain (P=0.001 and an improvement in spiritual wellbeing (P=0.005. Conclusion: Participation in the support groups as a manifest of empowering helps family caregivers to deal effectively with care giving difficulties. Psychoeducational programs lead to a decreased care giving strain and improve the spiritual wellbeing of the caregivers. Hence, supportive interventions should be considered by policy makers and professional health care providers for elderly people.

  5. Supporting Adults With Alzheimer's Disease and Related Major Neurocognitive Disorders and Their Caregivers: Effective Occupational Therapy Interventions.

    Science.gov (United States)

    Smallfield, Stacy

    Occupational therapy practitioners play a significant role in supporting adults with Alzheimer's disease and related major neurocognitive disorders, as well as their caregivers, through all phases of the disease process. This editorial highlights the systematic reviews completed in collaboration with the American Occupational Therapy Association's Evidence-Based Practice Project that summarize the evidence for the effectiveness of interventions within the scope of occupational therapy practice for this population. Readers are encouraged to translate and integrate this updated knowledge into everyday practice. Copyright © 2017 by the American Occupational Therapy Association, Inc.

  6. How Do Family Caregivers Describe Their Needs for Professional Help?

    Science.gov (United States)

    Yedidia, Michael J.; Tiedemann, Amy

    2008-01-01

    How aligned are the needs of family caregivers with the professional supports available to them? This article presents the results of the first phase of a study, in which four focus group interviews were conducted with a total of 40 family caregivers to elicit their views of the kinds of assistance they expect from nurses and social workers. The…

  7. Antecedents and consequences of caregiving structure on young mothers and their infants.

    Science.gov (United States)

    Arnold, Anna; Lewis, Jessica; Maximovich, Alexey; Ickovics, Jeannette; Kershaw, Trace

    2011-10-01

    This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother's report of herself as a caregiver and her selection of the baby's father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby's father. While mother's self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children.

  8. Site Support Program Plan Infrastructure Program

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1995-09-26

    The Fiscal Year 1996 Infrastructure Program Site Support Program Plan addresses the mission objectives, workscope, work breakdown structures (WBS), management approach, and resource requirements for the Infrastructure Program. Attached to the plan are appendices that provide more detailed information associated with scope definition. The Hanford Site`s infrastructure has served the Site for nearly 50 years during defense materials production. Now with the challenges of the new environmental cleanup mission, Hanford`s infrastructure must meet current and future mission needs in a constrained budget environment, while complying with more stringent environmental, safety, and health regulations. The infrastructure requires upgrading, streamlining, and enhancement in order to successfully support the site mission of cleaning up the Site, research and development, and economic transition.

  9. Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence.

    Science.gov (United States)

    Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S

    2016-10-01

    In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.

  10. Sleep in caregivers: what we know and what we need to learn.

    Science.gov (United States)

    McCurry, Susan M; Song, Yeonsu; Martin, Jennifer L

    2015-11-01

    The number of informal caregivers providing assistance to adults is increasing commensurate with our aging society. Sleep disturbances are prevalent in caregivers and associated with negative physical, medical, and functional outcomes. Here, we describe the predisposing, precipitating, and perpetuating factors contributing to the development of sleep problems in caregivers, and discuss three understudied caregiving populations that have clinical importance and unique circumstances influencing sleep quality and health. There is clear evidence supporting the interaction between sleep loss, caregiving stress, and vulnerability to chronic disease. Telehealth and telemedicine sleep interventions for caregivers combined with assistive technologies targeting care-receivers have potential to be more individualized, affordable, and widely accessible than traditional in-person insomnia treatment approaches. Limited data exist describing the etiology and treatment of sleep problems in caregivers of veterans, medical patients newly discharged from the hospital, and developmentally disabled adults. There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

  11. Effect of a Supportive Educational Program on Self-Efficacy of Mothers with Epileptic Children

    Directory of Open Access Journals (Sweden)

    Sepideh Gholami

    2016-07-01

    Full Text Available Background: In the aftermath of de-institutionalisation and the move to community management of epilepsia, mothers play an increasing role in the management of the illness. Mothers often complain of being misinformed and ill equipped to aid in the treatment. Aim: The purpose of this study was to investigate the effect of a Supportive Educational Program on self-efficacy of mothers with epileptic children. Method: This randomized controlled clinical trial was conducted on two groups of 50 mothers with epileptic children admitted to Ghaem Hospital in the city of Mashhad in 2014. Maternal self-efficacy was measured before and 6 weeks after intervention through Steffen’s Revised Scale for Caregiving Self-Efficacy as the research instrument. The Supportive Educational Program was implemented for the experimental group during five 60-minute sessions with an interval of 4 days. The control group received the routine care. Data analysis was performed using SPSS software (version 11.5. Results: The mean age of mothers in the experimental and control groups were 32.8±6.9 and 32.8±6.8 years, respectively. The findings of the independent t-test revealed significant differences between the two control (47.4±15.06 and experimental (66.5±11.5 groups following the intervention (p

  12. Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis.

    Science.gov (United States)

    Williams, Allison M; Tompa, Emile; Lero, Donna S; Fast, Janet; Yazdani, Amin; Zeytinoglu, Isik U

    2017-09-20

    Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic) and workers (health) of caregiver-friendly workplace policy intervention(s) for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s) in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s)? Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s) across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s) to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s) for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s) in each participating workplace in order to determine: the degree of support for the intervention(s) (reflected in the workplace culture); how sex and gender are implicated; co-workers' responses to the chosen intervention(s), and

  13. Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

    Science.gov (United States)

    Sharma, Manoj Kumar

    2016-01-01

    Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users.

  14. Ventilator use, respiratory problems, and caregiver well-being in korean patients with amyotrophic lateral sclerosis receiving home-based care.

    Science.gov (United States)

    Kim, Chul-Hoon; Kim, Myoung Soo

    2014-10-01

    The purpose of this study was to describe the status of ventilator use, respiratory problems, and caregiver well-being relating to patients with amyotrophic lateral sclerosis (ALS) using a home-based ventilator as well as to examine the relationship among ventilator use, respiratory problems, and caregiver well-being. Patients with ALS (n = 141) registered in the Severe-Rare Disease Center of the Korean Center for Disease Control and their caregivers (n = 83) were surveyed from August 2008 to April 2009. Trained research assistants visited patient homes; collected data using questionnaires; and then performed analyses with descriptive statistics, χ test, and t test as well as partial correlation analysis using SPSS WIN 18.0. Thirty-two patients used noninvasive ventilation (NIV), and 109 used tracheostomy and mechanical ventilation (TMV). One hundred of the TMV patients used the ventilator 24 hours per day. The ventilator circuit exchange cycle was 0.96 times per month for NIV patients and 1.17 times per month for TMV patients (t = -4.91, p NIV patients had a higher level of tidal volume than TMV patients (t = 3.34, p = .001). Approximately 22% of NIV patients and 24% of TMV patients used one or more physiotherapies for airway clearance. There was a significant relationship between hypoventilation symptoms and caregiver burden (r = .31, p = .006). Hypoventilation symptoms were positively related to physiotherapy (r = .24, p = .042), and physiotherapy was positively related to caregiver burden (r = .24, p = .043). On the basis of the findings of this study, care management for patients with ALS with a home-based ventilator as well as their caregiver's well-being was relatively inappropriate. We recommend that community-based support programs and burden relief programs be considered as managerial interventions.

  15. Self-stigma among caregivers of people with mental illness: toward caregivers’ empowerment

    Directory of Open Access Journals (Sweden)

    Girma E

    2014-01-01

    perceived psychosocial and biological explanations of mental illness (r=0.12, P<0.01. The only independent predictor of caregivers' self-stigma was perceived supernatural explanation of mental illness (standardized β=0.22, P<0.001. Conclusion: The tendency of caregivers to avoid being identified with the patients was observed. Low exposure to mental health information was also reported. Caregivers' self-stigma in this study was significantly correlated with perceived supernatural explanation of mental illness. Since caregivers' self-stigma may negatively influence patients' treatment-seeking, adherence, and rehabilitation processes, programs that enhance coping strategies by strengthening self-esteem and empowerment by health care providers and establish family support groups may be helpful to tackle self-stigma among caregivers of people with mental illness. Keywords: self-stigma, internalized stigma, caregivers, mental illness

  16. The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study

    Science.gov (United States)

    Tong, Allison; Palmer, Suetonia; Manns, Braden; Craig, Jonathan C; Ruospo, Marinella; Gargano, Letizia; Johnson, David W; Hegbrant, Jörgen; Olsson, Måns; Fishbane, Steven; Strippoli, Giovanni F M

    2013-01-01

    Objectives To explore the beliefs and expectations of patients and their caregivers about home haemodialysis in Italy where the prevalence of home haemodialysis is low. Design Semistructured, qualitative interview study with purposive sampling and thematic analysis. Setting Four dialysis centres in Italy without home haemodialysis services (Bari, Marsala, Nissoria and Taranto). Participants 22 patients receiving in-centre haemodialysis and 20 of their identified caregivers. Results We identified seven major themes that were central to patient and caregiver perceptions of home haemodialysis in regions without established services. Three positive themes were: flexibility and freedom (increased autonomy, minimised wasted time, liberation from strict dialysis schedules and gaining self-worth); comfort in familiar surroundings (family presence and support, avoiding the need for dialysis in hospital) and altruistic motivation to do home haemodialysis as an exemplar for other patients and families. Four negative themes were: disrupting sense of normality; family burden (an onerous responsibility, caregiver uncertainty and panic and visually confronting); housing constraints; healthcare by ‘professionals’ not ‘amateurs’ (relinquishing security and satisfaction with in-centre services) and isolation from peer support. Conclusions Patients without direct experience or previous education about home haemodialysis and their caregivers recognise the autonomy of home haemodialysis but are very concerned about the potential burden and personal sacrifice home haemodialysis will impose on caregivers and feel apprehensive about accepting the medical responsibilities of dialysis. To promote acceptance and uptake of home haemodialysis among patients and caregivers who have no experience of home dialysis, effective strategies are needed that provide information about home haemodialysis to patients and their caregivers, assure access to caregiver respite, provide continuous

  17. Teaching Low-Income Spanish-Speaking Caregivers to Implement EMT en Español With Their Young Children With Language Impairment: A Pilot Study.

    Science.gov (United States)

    Peredo, Tatiana Nogueira; Zelaya, Maria Isabel; Kaiser, Ann P

    2018-02-06

    This study examined the effectiveness of teaching low-income Spanish-speaking caregivers of young children with language impairment a naturalistic language intervention, EMT en Español. A single-case, multiple-baseline, across-behaviors design replicated across 3 caregiver-child dyads was used to examine the effects of teaching core EMT en Español strategies. The training program utilized the Teach-Model-Coach-Review instructional approach to teach strategies to support children's language development in Spanish. All sessions were at home and in Spanish. Caregivers increased their use of matched turns, target talk, expansions, and a communication elicitation procedure following training on each specific skill. Additionally, caregivers generalized increased use of matched turns and target talk to an untrained activity during the intervention period and maintained their behavior 1 month after completing intervention. Two of 3 caregivers generalized their use of expansions, and 1 caregiver generalized her use of a communication elicitation procedure. Modest effects on the child's number of different words were observed for 2 of the 3 target children over the course of the intervention sessions. All 3 children demonstrated increases in total spontaneous words. Spanish-speaking caregivers were able to implement naturalistic language teaching strategies with their young children with language impairment in a relatively short-term intervention.

  18. Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

    Science.gov (United States)

    Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

    2017-10-01

    To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; Psatisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

  19. The relationships between depression and other outcomes of chronic illness caregiving

    Directory of Open Access Journals (Sweden)

    Jirovec Mary M

    2005-02-01

    Full Text Available Abstract Background Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction. Methods The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables. Results Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p Conclusion Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.

  20. Strategies to support spirituality in health care communication: a home hospice cancer caregiver case study.

    Science.gov (United States)

    Reblin, Maija; Otis-Green, Shirley; Ellington, Lee; Clayton, Margaret F

    2014-12-01

    Although there is growing recognition of the importance of integrating spirituality within health care, there is little evidence to guide clinicians in how to best communicate with patients and family about their spiritual or existential concerns. Using an audio-recorded home hospice nurse visit immediately following the death of a patient as a case-study, we identify spiritually-sensitive communication strategies. The nurse incorporates spirituality in her support of the family by 1) creating space to allow for the expression of emotions and spiritual beliefs and 2) encouraging meaning-based coping, including emphasizing the caregivers' strengths and reframing negative experiences. Hospice provides an excellent venue for modeling successful examples of spiritual communication. Health care professionals can learn these techniques to support patients and families in their own holistic practice. All health care professionals benefit from proficiency in spiritual communication skills. Attention to spiritual concerns ultimately improves care. © The Author(s) 2014.